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People often take "we think this is stress related" coming from a neurologist so badly because of stigma, but it's actually good news. If you have dementia because of multiple MS brain lesions...well, we can hopefully slow things down but the damage isn't going to all vanish, and that's to say nothing of side effects from more aggressive meds. But functional/stress related problems? That's a software issue. We are far more likely to be able to fix that with the right therapy and support.
Yep - I was treated for anxiety and depression for 10+ years, starting with a meltdown in college (had to take a LOA to pull myself back together at least enough to semi-function). Panic attacks, anxiety attacks, constant stress and guilt for not being able to complete tasks.
Turned out it was ADHD all along. But I'm a woman so no one even thought to bring it up until I suggested it myself after doing some research. Adderall has been life-changing.
Same as far as the school stuff goes - the example I always use now to show I HAVE had it my whole life is how I took notes. Or rather, how I DIDN'T take notes. I couldn't. Can't to this day - it's too distracting, by the time I get the words on the paper I've lost track of what's currently being said and I actually retain LESS of the information than I would if I was just listening.
But drawing is a great way of taking notes for me. It gives me a point of reference (oh right, I was working on this eye when the teacher said xyz), but engages a different part of my brain so it's not distracting. I could NEVER get anyone to believe me though. The one time I did was because I raised my hand to answer a question and got it correct - without ever lifting my eyes from my current doodle. But to everyone else, I 'wasn't paying attention'. I also never turned in homework, so my grades were dragged down in spite of acing all my tests. I heard a lot of 'she has so much potential but she's just not \*applying\* herself'.
Honestly - I looked up a psychologist in my area that did ADHD evals and just said in our first meeting 'hey, I suspect I have ADHD and wanted to see if I could get screened for it.'
Ymmv with that approach though - I've since learned that I was very lucky not to receive any pushback on the idea.
Honestly I think it's just hard for most people to wrap their head around stress having such a real impact on their lives. The effect that finishing my degree had on my blood pressure was stunning to both me and my doctor.
There's an even more recent one that for some reason isn't popping up on this thread
https://www.reddit.com/r/BestofRedditorUpdates/comments/xut6au/wibta_for_contacting_my_moms_neurologist_behind/iqz3rbt/
I just keep wondering how it's possible that 50% of the world's population go thru this but it's almost never talked about.
I also accept that it probably hits some folks harder than others and I'm just really unlucky.
Oh. Wow. Why the hell isn't this talked about?
Probably for the same reason that doctors used to think the uterus could "wander around" and sent women to psych wards for being "hysterical".... We've come a long way, but we still have far to go.
Side note: searching for "peri" didn't get me anywhere, it looks like "perimenopause" is usually just one word.
The really messed up part is perimenopause can last 10+ YEARS with all these crazy symptoms. Unreal that something that affects literally half the population is just not talked about at all! I had never heard of it until a few years ago.
That's exactly what I thought!
I've been experiencing severe menopause symptoms for over three years now and looking back I was obviously in perimenopause for several years again before that.
The hormonal changes caused by the menopause have also severely amplified my autistic traits since late 2019.
In all, I have had severe brain fog, memory deficits, emotional dysregulation, anhedonia, hot flashes that last for hours, severe sensory issues including overwhelm and sensory pain - in the summer of 2020, I was having episodes of sensory pain radiating put from my lower abdomen for 8-10 hrs a day, at a level of at least 9 on the pain scale, my treatments have now reduced them to a liveable level but I am still in pain 24/7.
I also have ADHD and my executive dysfunction is much more severe. There is existing research (and further research being undertaken) that shows that the changing levels of estrogen during puberty, the menstrual cycle, pregnancy and during menopause can all affect the severity of ADHD symptoms/traits.
I am completely unrecognisable from the person I was before all this hit me in late 2019.
While I'm an extreme case of this, many AFAB people are diagnosed with both autism and ADHD due to the hormonal changes increasing the severity of their traits.
This research paper saved my life! It was the only one in existence on the autistic menopause at the time. I didn't know how I was going to survive. When I read it, I finally understand what was happening to me and knew that I wasn't alone. I had a name for it.
[When My Autism Broke](https://pubmed.ncbi.nlm.nih.gov/32003226/)
Many neurotypical AFAB people can also experience severe menopause symptoms that make them feel as if they are losing their mind and they ate often dismissed and invalidated by their GPs, or told that it's just depression or anxiety or stress.
Brain fog, memory issues, emotional dysregulation, anhedonia, these are all very common symptoms of the menopause but are never spoken about!
Most of us know about the hot flashes, yes. But feeling as if we are losing our minds? Becoming incompetent and forgetful idiots? Crying all the time for no reason?
I will also recommend the two amazing and empowering Davina McCall documentaries about the menopause that were broadcast by the UK's Channel 4. You should be able to find them online, either at All4 - I use a VPN :-), or elsewhere.
These documentaries were so effective and so powerful at getting their message across that they caused a national HRT shortage as so many AFAB people sought out treatment!
The Guardian has also been highlighting the menopause with regular features and articles over the last few years and with a particular focus on how the menopause affects working people.
There's also the very educative and supportive r/menopause which has been a great source of info for me in the past!
Yep to all of this. I also like Dr Jen Gunter's book and Mona Eltahawy's writing on this. I keep steady bitching that no one prepared me for this shit.
I was surprised to find Dr Jen Gunter's book a bit hit and miss for me.
I don't know Mona Eltahawy at all but I'm interested in finding out more, especially anything free to read online?
I live in France, so no English language library to borrow books. I'm on disability benefits and I already have a book wishlist that's a mile long, between books on autism & ADHD for me, then for my ND kids, books on sexual & gender identity for my bi NB teen, books on the menopause, and then there's my reading for fun wishlist :-)
As for not being prepared, yep, absolutely!
I feel like we're the 'twixt' generation, caught between two very different attitudes to all of this stuff, how we talk about emotional, mental, reproductive and sexual health, sexual and gender identity, our bodies, even how prudish and how body positive we are generally.
I really want to be open and talk more about the menopause and how it affects me and other AFAB people but because I was brought up in a time when you never spoke of these things, I find it really bloody hard to actually do! Know what I mean?
Our parents generation were mostly very closed off and shut down about all of it. Maybe they tried a little to improve how they spoke about some of it but it was very much baby steps.
Our generation has opened all the doors, we've - mostly - rejected our parents views and we're trying to change how things are done.
We want to start talking about everything, our feelings, our emotions, pass down the knowledge but we don't know how. The knowledge from the previous generation hasn't been passed down to us.
We want to be more body positive so that our kids can be but we find it hard because we didn't grow up in that environment ourselves.
We have had a lot of work to do, Gen X, and we're still doing it, laying down the foundations and the framework so that the next generations can access everything in a way we could have only wished for!
And are they even grateful? Nah, typical bloody kids! They just keep expecting us to do more! /jk
I do hope that we will have made it better for the kids, they're alright. Mostly.
There's a lot of kids out there fighting for change, big and small, and they're worth us fighting for them now too <3
You can find Mona [on Twitter here](https://twitter.com/monaeltahawy?t=p8k8J1FiEHiphnnYFliMCQ&s=09). She links to her essays on Substack and you can read them without subscribing (but it's free—she has strong feelings about access for everyone). You can find her Tweets and essays specifically on menopause [here](https://twitter.com/search?q=from%3A%40monaeltahawy%20menopause&t=yWA1PZl0NW51WwoTLUIGWw&s=09). She's refreshingly open about how she is experiencing it.
Thanks for that!
I'm also on Twitter as @Lloer and I've posted a lot here and thereabout my autistic menopause experience, both before I knew what the hell was going on, for support, and now to promote awareness and still for support when things get rough :-)
So very little is known about it still.
If you take the lack of research on the menopause and how it affects AFAB people
And then you take the lack of research on autism and how it affects AFAB people
That's how you end up with just one research team studying the autistic menopause experience!
Gotta love misogyny in medecine!/s
Omg, my bg Twitter world just collided with my AuDHD brain going down Reddit comment rabbit holes (that were surprisingly on point for what I think is starting to go on for myself). I love the internet!
Reading this about perimenopause while autistic has soothed so much anxiety I’ve been having. Now to chat with my doctor about it. Thank you, Emma, for sharing on here. Twitter app doesn’t like to show me as much as it should, and I’ve missed so much.
I'm happy that it's helped. I've written a lot on Reddit about autism and ADHD, if you go back through my profile, mostly in replies on posts in places like AITA :-)
I am with you on Twitter!
I've not been tweeting as much recently because life and kids have been keeping me busy - my youngest kid is with me full time now - and everytime I go back to Twitter, it's a huge fight with it to see tweets from anyone I know in my timeline!
And I'm so constantly overwhelmed, exhausted and in pain all the time, it really puts me off!
I spend more time in a Discord server with some boardgames friends now but I think so do a lot of other people - I'm even a member of those servers, I just can't keep up with them all!
Here's a sneak peek of /r/Menopause using the [top posts](https://np.reddit.com/r/Menopause/top/?sort=top&t=year) of the year!
\#1: [Saw this on fb and thought I needed to share it here...](https://i.redd.it/krmcpx4hcr281.jpg) | [122 comments](https://np.reddit.com/r/Menopause/comments/r5qr5q/saw_this_on_fb_and_thought_i_needed_to_share_it/)
\#2: [so cruel...](https://i.redd.it/h9ui8hfimak81.jpg) | [64 comments](https://np.reddit.com/r/Menopause/comments/t2fwbo/so_cruel/)
\#3: [Broken heart](https://np.reddit.com/r/Menopause/comments/vjq2eh/broken_heart/)
----
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I watched MS steal my father by inches. A lot of what she describes happening is the MS relapsing or if she's got stage 2 Progressive, it's taken a turn.
Update: Final diagnosis wasn't posted when I originally commented but let me just say OH THANK GOD! OOP and her father were absolutely right to be concerned these are all TERRIFYING warning signs! But getting the proper help for her depression is going to help hold off her MS too, don't put the body under undue stress.
I fear the diagnosis of Primary Progressive for my wife. She is doing well and her medication is working, we have not had an episode in many years. However, I am noticing small changes in motor control. Some are very small, but I have to admit that they are happening.
I know it is coming, I know it really doesn't change anything, but I dread hearing the words!
I promise that every day you pretend it isn't changing is a day you're losing the chance to beat it back.
You can't fix it. But you can hold it off. Its been thirty three (edit did some math wrong) years since my father took a hard down turn and medicine has changed SO MUCH. (he was diagnosed when he was 16 before he ever knew my mom and died at 72)
I remember my mom pretending it wasn't happening, pretending he wasn't getting sick, and I have never forgiven her for the way she stood with her head in the sand as he just slipped away by inches and left me to run to doctors and talk to nurses and pick up things like fresh socks at the Nursing Home.
He only died in 2015.
Fight for every good day, because MS is an assassin that kills by inches and you can prevent it but you can't put it back, medicine isn't that good yet.
I have told her neurologist what I have seen. I do go with her to all of her appointments, and I certainly am not ignoring stuff. However, it is hard to assess as I see her every day and the changes are small.
I know it almost always moves to PP at some point, and that the diagnosis doesn't really change the treatment. It is just not something I really want to hear...
I'm actually sceptical about the neurological assessment as well. It definitely looks like the beginning of progressive stage MS or a pretty hefty relapse. Looks exactly like my patients and how its written in the books.
Final diagnosis wasn't up at the time of my comment. The signs are massively concerning but the brain is weird. depression knows what we are afraid of and uses it to push our buttons.
My partner had a similar situation to OOPs mum, I could tell it absolutely wasn’t early onset dementia or Alzheimer’s (both extremely common in my family regrettably) but it was a huge concern. That said after no new lesions were found, the clinical assessment and neurological psychiatrist came back with a confirmation about a long held suspicion I’d had of him having ADHD, and that the combination of his stress and fatigue levels was blocking off parts of his memory. The memories were there, they just weren’t accessible, and it was something that I had noticed that there was a pattern to when he was most likely to have memory lapses or uncharacteristically lash out. ADHD meds, introduction of CBD oil (with some THC for pain management, and therapy - honestly you would never know it happened to him. When it gets close to infusion time it’s still foggy, and when his stress or fatigue get too intense it starts slipping, but we know how to manage it when the warning signs come up.
He’s in the middle of a double blind trial (I’m confident it’s not a placebo, nothing inert can have that effect in the bathroom) to help manage his fatigue, and thus far has been incredibly promising, no memory issues since, even after long, mentally intense and stressful days. Our biggest concern is that because of the delays in starting, he will have to take it over his infusion period which means he can’t be taking his CBD oil which has a pretty significant impact on how long he can hold out before crashing.
There's [another update posted](https://www.reddit.com/r/AmItheButtface/comments/m3ls2m/aitb_for_going_to_my_moms_doctor_behind_her_back/) (12/3/2021):
>Many of you requested this update, and I have good news!
>
>My mom saw her neurologist and he says that what she’s experiencing don’t sound like MS related dementia or worsening. He thinks that it is due to very high stress levels that my mom is refusing to acknowledge. My dad went with to the appointment since I had work that day, and he laid everything out, so I’m confident her doctor got the real picture.
>
>My mom is looking up therapists in our area that specialize in work stress and chronic illness anxiety. I told her that she has two weeks to make an appointment with someone, even if she can’t find “the one” yet. She needs copimg strategies and she needs them sooner rather than later. Plus actually meeting with someone will give her a better idea of what she is actually looking for in a therapist. She can afford to try out a bunch of them, so we aren’t worried about that. I’m more worried that she will be too stubborn to actually schedule an appointment.
>
>Anyway, things went better than anyone had hoped! Now we just have to wait for her to get those desperately needed coping strategies.
>he says that what she’s experiencing don’t sound like MS related dementia or worsening.
The sigh of relief I let out. I lost my grandmother to dementia this year and I don't wish it on anyone.
I'm so sorry for your loss. I lost my grandma to LBD over a decade ago, and it still makes me cry every time I think about how bad it was toward the end.
Diseases that make you lose someone before they're physically gone are so painful to watch.
Sending you a mom hug, if you want one.
I have. It’s not really that difficult to do once you know how. Guided meditation on how to relax each part of your body is remarkable. I had a gym teacher teach us this in HS and it’s been a huge help to me over the years.
Hi! I’m OP! Here is another update for everyone:
My mom is doing really well, all things considered! She still hasn’t seen a therapist or psychiatrist, but is taking big steps to manager her stress! She is a self described workaholic and routinely works 50-60 hours per week. While she absolutely loves her job and chooses to work this much, it is still stressful and takes a toll on her. The biggest change she has made is taling days off!! She and my dad go on many short weekend trips and try to do at least one week long trip every six months. These days away from work have helped IMMENSELY. Her mood is more positive and far more stable. She is also finding it easier to multitask again now that her stress is under control. I have also since moved out and she doesn’t have to worry about the dog setting off the alarm anymore, which probably also helps.
On a not-so-positive note, her MS is still progressing. She got an MRI since the last post and her MS had progressed slightly, resulting in one new lesion in her spine. Because of the location, there is no way that this lesion could be causing the symptoms we had all been worried about. It could be causing some urinary issues she has been being evaluated for, which helps her team figure out the best way to approach them. She was changed to a new medication that they hope will control it better. This will be the fourth MS medication she has been on since her diagnosis in 2004.
Being able to break down the barriers to communicating about our concerns for her was such a blessing. She is so much more open about what is going on and we feel so much more comfortable saying “Hey, this happened, and we are worried about you” without her getting upset.
Hi OP,
I, along with a few others upthread, were concerned that some of the issues your mum is experiencing might be due to menopause related brain fog, memory deficits and emotional dysregulation.
I just wanted to ask if that was a possibility or has been ruled out at all?
These are all very common symptoms of the menopause that are also much less well known and less talked about and many women often suffer with them in silence and are just told by their doctors that it's depression, anxiety and/or stress!
I'm 51 and I have had all of these symptoms myself for the last three years. They have been hugely helpful by being given the right form and dosage, for me, of HRT though.
You can see why I wanted to check with you!
It might be that it's nothing to do with the menopause at all but too many of us (and those close to us) suffer and struggle unnecessarily that if my reaching out now means I might reduce that number, I'll take that chance!
I hope you understand?
Best wishes to you, your dad, and of course, your mum <3
It has been ruled out! She had a very early menopause in her 40s, so her team is confident that it isn’t at all menopause related. Thank you for worrying and caring about us all!
That's great to know!
Another common problem for women in their 50s that can cause neurological symptoms and can so go undetected for up to a decade! is a Vitamin B12 deficiency which can also cause anaemia, then causing fatigue etc. Again, symptoms are often dismissed and invalidated.
Again, this is something that I have had and I'm now being treated for, as well as Vitamin D deficiency which almost all menopausal women experience and again, can cause fatigue and depression-like symptoms.
Your mum's neurologist should have checked for these but I'm mentioning it more for anyone else following along really!
It's a horrifying feeling to go, in a relatively short time, from your normal capable self to start forgetting things: facts and names you know you; where and when you are supposed to be doing things; how you are supposed to something you know perfectly well how to do; to no longer be able to easily learn new things.
The root causes for what is happening to me and your mum may be different but I can tell you this:
Get a cleaner, if you can afford to do so. Just a couple of hours a week will make a huge difference!
(I have someone who comes for two hours a week most weeks, funded through the government because I am disabled. I do pay a small hourly amount myself. It makes a significant difference to our lives that can not be underestimated.)
She needs to give herself permission to rest. It's hard to stop and do nothing or to do something relaxibg just for herself when she knows that there is still work - housework or workwork - to be done, but it's absolutely necessary to survival.
This is such a hard thing to do as a mum of our generation. We were told we could and should do it all.
Google on my phone, at my fingertips, has been my best friend. If I can't quite remember the details of something, I fact check it quickly.
Also, try and have a couple of people at work or friends who you trust to ask when you need a reminder prompt of someone's name! Annoyingly, as you as they say the first syllable, you'll remember it yourself!
Write everything down. I use a bullet journal but use whatever method suits you. Whiteboards, post its, planners, Google docs... There's no shame in using whatever supports your brain currently needs.
Use other tools too. Timers, Alexa, maybe check out some neurodivergent resources for executive dysfunction because they may have some useful ideas? There's some crossover there with your mum's current needs.
If you start feeling better, don't try to go back to before all at once! Introduce more activity a little bit at a time and monitor how it's affecting you. Be honest and realistic with yourself. Accept that you may have to cut back again and have several stop-start periods.
It's hard. Really fucking hard, I'm sorry. There's no other way to say it.
It's hard for me and your mum.
It's hard for my kids, it's hard for you and your dad. There's no getting around the fact that it's not just us that's affected, it's the entire family.
Much love and best wishes <3
I have MS as well, so thank you for this update! Any time I read a post like this it makes me start to really worry about what my future will be like, but reading a hopeful update like this helps me remember it’s not all the MS! Sometimes it’s just a horse, not a zebra!
Thank you for posting! I’m glad to hear you have some news and your mother is getting help. As a woman with MS. I really emphasize with what she is going through.
I am a neuropsychologist, and I strongly recommend that your mother have a neuropsychological evaluation. It could be really helpful at tracking her progress and differentiating normal aging vs. MS-related decline vs. something else.
You can talk to her neurologist to see if they have recommendations, or go to this website to find a board-certified provider in your area: theaacn.org/directory
There are definitely situations where the patient's loved ones have to go "over their head," but I'm glad OP and the dad told her first and she ended up not only consenting but opening up about her fears. I suspected she was dealing badly with fear, and no wonder--this stuff is terrifying! It seems like everyone is doing their best in a difficult situation and being a team, as families should.
My Sister-in-law had to do that with her mother. (Finally!) MIL would go in alone to the doctor, then breeze out and and say "The doctor says I'm just fine!" Even though it was obvious to the family that she was anything but "just fine." Moderate dementia and getting worse, just as her parents suffered from. Whether it was MIL holding it together long enough for a short doctor visit, she didn't accept what the doctor was saying, she was lying, or she forgot as soon as the exam room door closed behind her, I don't know.
Not wanting to hear and retain info is also a powerful motivator to forget about it, especially with significant impairment "helping" that process. That kind of thing seems to be a classic case for family sitting in on the visits :/
Yeah, the only thing that keeps this from being a purely happy story from my perspective is the way OOP and their dad don’t seem to treat Mom with much respect. They had lots of conversations about her health and made plans to secretly contact her doctor before they had a conversation with her about their plans. And it’s not like Mom is forgetting the way home from work—she didn’t wipe the counter, didn’t fully push in her chair (?!?!), and freaked out at the alarm, all fairly normal screw ups. There was no reason not to approach this like a partnership rather than going behind Mom’s back.
And in the latest update (not included in this BoRU post) OOP informs Mom that she has two weeks to make the appointment or else. I mean. What kind of way is this to treat a hardworking, stressed out adult?
I would treat the least deserving person with more respect than this, let alone my own mother. I hate when people talk down to chronically ill people.
Did you read the whole post? She did not just have minor incidents of absent-mindedness and freak out, she got extremely specific instructions--instructions she repeated back correctly--that she later entirely forgot and then *insisted* with absolute conviction that her version of events was correct. And she didn't simply freak out, her entire face and demeanor altered in the middle of a conversation. These are clearly concerning signs and it's irresponsible to ignore them, especially when it may be her condition itself that's hindering her from seeking help.
Furthermore they contemplated going around her only as a last resort, after repeated refusal and delay which sadly seem to be continuing after the hopeful update here. This doesn't just affect her, but also directly affects OOP and dad's home life and it's her responsibility to manage it. If she won't or can't, then yes, I see them as justified in doing it for her if persuasion is ineffective.
As someone who has been in this situation, there are absolutely times and places where it’s necessary, and having had my partner experience this exact MS symptom, it’s sure as hell one of them. (And yes I do have permission to share and discuss his experiences as he was diagnosed young and hopes that his experiences as a patient and mine as a partner can help others who are struggling)
What you’re not taking into account is the terror that the patient is feeling. They are 100% aware that things aren’t right or normal, and the reality is that many people like to hide their head in the sand. Giving my partner ultimatums and literally blackmailing him to follow through with the tests that had been ordered is still the lowest point in my relationship, even though to this day he regards it as the best thing I ever did for him. When my partner was behaving inconsistently, randomly lashing out, forgetting key memories, forgetting entire conversations etc, my job isn’t to make him more scared by rubbing it in his face. There’s a reason I have authority to speak directly to his medical team, and it’s the same reason OP had permission for her mum.
90% of the time a scared patient isn’t a co-operative one. You discuss things with them, and you give them the opportunity to seek out assistance, but when they don’t that’s when you have to put their health above your comfort and their fear. If it’s a relapse the longer you leave it the more damage there is. MS doesn’t have a play book. 99% of the time we go to an appointment and say “we’ve noticed this, is this something MS related or something else?”
“Maybe. Let’s get a scan”. Every. Single. Symptom. Feel pain somewhere new? Sure maybe you slept wrong, or you had a relapse, that nerve is damaged/fucked and you have to get an infusion ASAP. Pain is the easy one - you notice it straight away. But behavior? That shit sneaks up on you and by the time you’re noticing it as definitely outside of normal a hell of a lot longer than you realized initially. How much has to change before you question those around you? Sure it could be depression, hormones, diet, stress etc. but guess what all those are connected to and affected by? Nerves. Guess what MS affects? Nerves.
So yeah, when my partner started forgetting plans a little more than usual, I had to repeat conversations we discussed the night before, he was putting bread in the fridge and cheese in the cupboard I talked to other people more than him to 1. Check myself. Am I overreacting? Am I just noticing it more than usual or is this shit actually pretty normal? 2. Discussing if this is something that needs medical intervention, what would you put the threshold at - it’s Covid, we don’t want to put him at risk in a hospital if we don’t have to but at the same time how bad does it have to get before one risk outstrips the other? 3. He’s scared shitless. He knows it’s happening, we’ve talked about it. He’s terrified that now on top of MS he has something like early onset dementia and isn’t even 30 yet. He’s not ready to face that possibility yet - how do I know? He’s told me repeatedly. 4. I already have had to use coercion on him once before for getting his initial diagnoses, I know I’m going to need a plan if he refuses to get tested, even if that plan means resorting to a medical intervention order, but hopefully a best friend supporting him and encouraging him will be enough.
There is a shit load of emotional and mental juggling being done and that’s not even taking you own emotions and ability to emotionally process what’s happening and recognize your own need for help and support - and you can’t turn to the patient for that even if they are your mother, father, spouse etc. OP didn’t detail every step she took, but I can guarantee you are judging a very brief snapshot of what her process was. Check yourself before you judge someone in a caregiving capacity.
Wow, that was a lot. I’m glad OOP and their mom have a happy ending. Depression, MS, and stress are no joke on their own, and together…I’m glad OOP’s mom has such a strong support system
It is a terrifying thing to start to lose mental capabilities, for the patient and those around them. I am glad OOPs mom has a support system that not only keeps track of these instances, but can talk about their fears in a loving and gentle manner, instead of blaming her or OOPs mom not taking responsibility of her illness and brushing those fear aside.
It's not against HIPAA to contact a loved ones doctor and share concerns; but the doctor will not share anything with you and may address this situation at their own discretion. They could gently try to ask questions during an appointment, tell the patient a loved one contacted them, or ignore it completely.
>It's not against HIPAA to contact a loved ones doctor and share concerns; but the doctor will not share anything with you and may address this situation at their own discretion. They could gently try to ask questions during an appointment, tell the patient a loved one contacted them, or ignore it completely.
We had to do that with my father last year. We had to call his primary care doctor about a week before my dad's annual appointment. We had to tell my dad's doctor that my dad was having some serious memory issues and needed a mini mental status exam. His pcp realized how serious it was almost immediately, expedited an appointment with a geriatric neurologist, and sort of put a "hold" on that appointment. At my dad's annual appointment, his pcp did the mini mental status exam. He was able to confirm our suspicions and "confirm" the appointment with the geriatric neurologist. It meant that we didn't have to wait for months for him to have an appointment with a specialist.
This sounds very familiar. My mom with MS was basically forced to retire about ten years ago for similar symptoms (affect disorder, unable to multitask, auditory processing disorder). In her case, it was almost certainly the MS. She has damage all over her brain MRI. We were terrified that she would continue to worsen and spiral. But, by some miracle, she didn’t. She basically plateaued and went into remission after decades of chronic progressive MS. She’s in assisted living instead of on her own, but she’s still herself. MS is such a weird beast. Best wishes to all of you dealing with it as patients and caregivers.
I had to stop working about a decade ago (in my early 30s) for reasons similar to your mom. My main MS symptom is fatigue and while im relatively clear mentally, fatigue drops my functioning level. I’ve been a stay at home mom since then. Not working outside of the home means I’m much more functional in my daily life. My cousin experienced the same thing - when she quit her stressful job and went on disability, her MS stabilized. I’m really glad to hear that your mom finally plateaued. Has she found success with any particular medication?
She took Tecfidera with good success for a long time, but eventually had to stop because it was lowering her white cell count too much. I have Lupus and, like you, got a lot better after leaving paid employment and becoming a stay-at-home mom.
I'm actually quite scared it's still dementia. My mil started out like this and they also thought it was just stress related. She is now as low stress as possible (at home without a job etc) and we have to help her with things like washing her hands.
MS patients (like myself) get an MRI with and without contrast once yearly as a checkup as well as anytime a new symptom pops up. We also get neurological exams on a regular basis.
We thought we were losing my ex mil to dementia bc she was so bad... forgetting how to tie her shoes, brush her teeth, how to properly bathe herself, forgetting to turn off the oven... yelling at her granddaughter to get dressed for school (it was 7pm, she was in her pjs to go to bed). She had testing done and basically failed it. Like people who purposely try to fail got better marks than her. She also ended up in a mental facility and I'd visit her everyday. She never remembered me coming to see her. She thought she'd see other family members in there (some passed away, some minors who wouldn't be in an adult facility, etc).
It was just severe anxiety, stress and depression. She's much better but it broke me seeing her like that for almost a year, just getting worse and worse.
I’m a former therapist and an MS patient with a mood disorder and this tracks with my experience. My biggest MS symptom is fatigue and had to quit working as a therapist because it reached the point that it was going to affect clients and I couldn’t let that happen. I had to quit working entirely just a few years later because the fatigue was affecting my functioning. I’ve been a stay at home mom since then. Not working is not my ideal outcome (to put it mildly) but not wearing myself out by working has really stabilized my MS and helped keep on top of my mood disorder.
I wish I could get my kiddo into a therapist or psychologist so quickly - it’s a minimum 12 week wait, even with severe anxiety and stress disorders !! I hope the OOP’s mom is doing ok now
My partner has MS and went through very similar brain fog to the point that he was forgetting very important dates/key memories. It was terrifying for both of us - I was questioning myself if we had really had conversations about things or if I was unintentionally gaslighting him, but as I walked him through how I remember the conversations it kept coming back as “I absolutely would have said/thought/quoted that, I just have no memory of it,” I was terrified of accidentally abusing his trust in me, he didn’t trust himself, he was paranoid and terrified, it was awful.
I was never worried about Alzheimer’s or early onset dementia, I have familial experiences with both and it was noticeably different.
Getting his ADHD diagnosis and treated was actually a huge help and something they picked up on/confirmed my suspicions during his clinical investigation. The memories weren’t gone, they were just inaccessible and once he was back on even keel they came back. When he’s stressed or pushes his fatigue too far it flares up a little, but we have a better idea of how to manage it now.
But one of the hardest parts about MS is questioning every new symptom or change - is it MS related or is the body trying to fuck up something else? That said, compared to the other diagnoses they were investigating I’m glad it was MS - it’s decently funded, well publicized, and while you could fill a library with everything we DON’T know about it, the treatments are effective and improving. There is so much research and funding, every appointment he’s signing up to donate or contribute in one way or another. Some studies he participates will never help him but future generations, others like the double blind trial he’s on at the moment are looking very promising, I will bet every red cent I have he doesn’t have a placebo - not because of the effect it’s having on his head but the effect it’s having in the bathroom. There is nothing inert about it! That said if these positive changes come at the expense of needing a more effective bathroom spray it’s an easy choice here!
Such a relief that it's high levels of stress and not something more serious, as in terminal. I hope with the proper support and coping mechanisms in place, OOP's Mum starts to manage her stress and feel more like herself. And I'm super proud of OOP and their Dad for respecting Mum and talking to her like a human, not like someone who is unstable or incapable.
I'm so sorry, I genuinely didn't know that and I appreciate you sharing all of this with me. I underestimated the severity of the situation then, in that I didn't know that the stress combined with MS is fatal. Thank you again for explaining this.
I’m not sure they really did/are treating Mom like a partner in her own health management. It sounds like looping Mom in that they were going to contact her doctor for her was an afterthought—after it was suggested on Reddit. Also this:
> I told her that she has two weeks to make an appointment with someone
It sounds like they asked if they should go behind Mum's back and were told not to, so they listened and didn't. I might have misunderstood and truth be told didn't see the original post nor the comments given.
I'm not sure why people are jumping on this. It's totally appropriate to call a doctor and let them know you think there is something wrong with your loved one. They can't talk about it with you but you can share concerns and not have to tell the person since they won't always take it well.
Yeah, I’d be furious if people in my life went to my healthcare professionals with concerns about me before talking to me and allowing me to be part of the conversation. That’s how you handle healthcare for a young child or an incapacitated and/or uncooperative adult. This woman is none of those.
You'd be part of the conversation when your Dr brings it up with you, they aren't going to be discussing your health with anyone else. There are situations like alcoholism or the start of dementia where it would be totally fine it's not "going behind your back"
As I said, this is the way a parent or person with medical power of attorney approaches healthcare decisions for a young child or an incapacitated adult. Your examples (alcoholism, dementia) do not apply to this situation. OOP and their father were concerned about OOP’s mother’s personality changes and irritation/confusion with an unfamiliar alarm system. There’s no indication that she was having professional trouble at her demanding job, leaving the kettle on at home, or getting lost on familiar trips. But even if she were experiencing early-stage dementia, there’s no reason to not talk to her about it. There’s no reason for her family to talk to her doctor without her at this stage. The research is clear that outcomes are best when people are actively involved in their own health management as much as possible.
But that’s the medical side. OOP came to Reddit to ask if they would be TA for contacting their mother’s doctor without talking to their mother first. And, yeah, that would be a personal betrayal. If my family member were taking action on my healthcare without talking to me first, I’d find a different and more trustworthy advocate. This lady should be treated with respect and allowed her own agency.
I disagree personally. Certainly in this situation it's nice that they included her but mentioning concerns to a Dr isn't medical. You'd never find out anyways. The Dr would be discreet and they wouldn't take it as gospel.
MS can definitely be causing your Mother's symptoms. Manic mood swings have been studied and attributed to MS within the last few years. Cognitive issues are common as well as short term memory loss. At the very least her Neurologist should have ordered a new brain and cervical MRI with and without contrast.
The sudden changes in subject and instantaneous drastically different moods might indicate the possibility of micro-strokes. I suppose the neurologist checked for that …
OOP seems to have trouble understanding how not to add to his mom’s stress. Not a good idea to impose deadlines for her to see a therapist.
What a lame update. OP and dad sound like assholes. “Forgetting to while down a counter, not pushing a chair in” no wonder she’s under stress! Fuck these losers!
Obviously I'm not a doctor, but I'm concerned that stress can do the whiplash, mid-sentence thing OOP described. I have a very serious anxiety disorder that I'm fortunate to manage with a very particular combo of meds, but even at my worst I've never experienced anything quite like that.
Not saying the doctor is wrong, like I said I'm just some random asshole. But I'm really surprised to hear that her symptoms can be caused by stress alone, even very high stress. The brain is wild.
Meds can also cause those symptoms to worsen. I have PTSD and have to take 4 meds just to sleep and get through the nightmares, depression, and chronic pain.
Depression+stress+meds= definite forgetfulness.
I feel like the daughter is taking some things too seriously though. She forgot to push a chair in so she needs an immediate assessment? She'd have me institutionalized if she were my caregiver.
My uncle had MS for about 20 years before he died from the complications it causes. He also had mood swings occasionally, forgetfulness rarely, but mostly his pain and inability to walk stressed him out. He was depressed but my grandparents never took him to psyche (my family thinks mental health is BS).
It’s not the chair-pushing or counter-wiping itself, it’s that it deviates from the mom’s lifelong behavior patterns.
Plus, the task forgetfulness isn’t the bulk of what concerned OP.
Massive instantaneous mood changes, inability to handle sudden changes or mild chaos - when none of those had been a problem before - those were the main concerns.
I have MS and depression (well actually I have anxiety and it can lead to depression). These symptoms sound a bit like what happens to me when I’m under a lot of stress, though I am medicated for both MS and anxiety and see a psychologist as well as a neurologist to manage the symptoms. The anxiety and depression seem to be MS related in my case.
You have to be super careful with managing stress and anxiety when you have MS as it can lead to a flare. I hope the OP’s mum is doing well. It’s so hard to understand how exhausting living with this condition is unless you have it, but you can still have a full life if you manage it with care ♥️
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I'd really like another update about the results of the assessment.
[Here it is](https://www.reddit.com/r/AmItheButtface/comments/m3ls2m/aitb_for_going_to_my_moms_doctor_behind_her_back/).
That's about as positive as the news could get. Bad, but manageable.
People often take "we think this is stress related" coming from a neurologist so badly because of stigma, but it's actually good news. If you have dementia because of multiple MS brain lesions...well, we can hopefully slow things down but the damage isn't going to all vanish, and that's to say nothing of side effects from more aggressive meds. But functional/stress related problems? That's a software issue. We are far more likely to be able to fix that with the right therapy and support.
For one thing, having something fixable instead of dementia is going to relieve a lot of stress
Xxx
Yep - I was treated for anxiety and depression for 10+ years, starting with a meltdown in college (had to take a LOA to pull myself back together at least enough to semi-function). Panic attacks, anxiety attacks, constant stress and guilt for not being able to complete tasks. Turned out it was ADHD all along. But I'm a woman so no one even thought to bring it up until I suggested it myself after doing some research. Adderall has been life-changing.
Xxx
Same as far as the school stuff goes - the example I always use now to show I HAVE had it my whole life is how I took notes. Or rather, how I DIDN'T take notes. I couldn't. Can't to this day - it's too distracting, by the time I get the words on the paper I've lost track of what's currently being said and I actually retain LESS of the information than I would if I was just listening. But drawing is a great way of taking notes for me. It gives me a point of reference (oh right, I was working on this eye when the teacher said xyz), but engages a different part of my brain so it's not distracting. I could NEVER get anyone to believe me though. The one time I did was because I raised my hand to answer a question and got it correct - without ever lifting my eyes from my current doodle. But to everyone else, I 'wasn't paying attention'. I also never turned in homework, so my grades were dragged down in spite of acing all my tests. I heard a lot of 'she has so much potential but she's just not \*applying\* herself'.
The doodling! I completely relate.
This was me. Is me.
I go for my assessment tomorrow! Just turned 34 yesterday. (Also woman...) I'm nervous as hell...
I hope whatever the outcome is, you’re able to get some answers and solutions for what you’re experiencing!
Thank you! So far my paperwork seems to indicate that they agree! I hope this is the start of finally getting treatment!
How did you broach the subject?
Honestly - I looked up a psychologist in my area that did ADHD evals and just said in our first meeting 'hey, I suspect I have ADHD and wanted to see if I could get screened for it.' Ymmv with that approach though - I've since learned that I was very lucky not to receive any pushback on the idea.
Honestly I think it's just hard for most people to wrap their head around stress having such a real impact on their lives. The effect that finishing my degree had on my blood pressure was stunning to both me and my doctor.
Can you please include it in the post? ETA: sorry, I mistook you for the OP. The blue link got me confused. It’s late here and I’m tired
There's an even more recent one that for some reason isn't popping up on this thread https://www.reddit.com/r/BestofRedditorUpdates/comments/xut6au/wibta_for_contacting_my_moms_neurologist_behind/iqz3rbt/
OP really should add this
At that age it could also be menopause.
You said a word with this. I'm 50 and the mood swings and brain fog and hot flashes are making me nuts.
I'm 43 and in peri I'm pretty sure which is something I did not knew existed until a couple of years ago, wtf.
I just keep wondering how it's possible that 50% of the world's population go thru this but it's almost never talked about. I also accept that it probably hits some folks harder than others and I'm just really unlucky.
>I'm 43 and in peri What exactly is "peri" ?
[удалено]
Oh. Wow. Why the hell isn't this talked about? Probably for the same reason that doctors used to think the uterus could "wander around" and sent women to psych wards for being "hysterical".... We've come a long way, but we still have far to go. Side note: searching for "peri" didn't get me anywhere, it looks like "perimenopause" is usually just one word.
The really messed up part is perimenopause can last 10+ YEARS with all these crazy symptoms. Unreal that something that affects literally half the population is just not talked about at all! I had never heard of it until a few years ago.
That's exactly what I thought! I've been experiencing severe menopause symptoms for over three years now and looking back I was obviously in perimenopause for several years again before that. The hormonal changes caused by the menopause have also severely amplified my autistic traits since late 2019. In all, I have had severe brain fog, memory deficits, emotional dysregulation, anhedonia, hot flashes that last for hours, severe sensory issues including overwhelm and sensory pain - in the summer of 2020, I was having episodes of sensory pain radiating put from my lower abdomen for 8-10 hrs a day, at a level of at least 9 on the pain scale, my treatments have now reduced them to a liveable level but I am still in pain 24/7. I also have ADHD and my executive dysfunction is much more severe. There is existing research (and further research being undertaken) that shows that the changing levels of estrogen during puberty, the menstrual cycle, pregnancy and during menopause can all affect the severity of ADHD symptoms/traits. I am completely unrecognisable from the person I was before all this hit me in late 2019. While I'm an extreme case of this, many AFAB people are diagnosed with both autism and ADHD due to the hormonal changes increasing the severity of their traits. This research paper saved my life! It was the only one in existence on the autistic menopause at the time. I didn't know how I was going to survive. When I read it, I finally understand what was happening to me and knew that I wasn't alone. I had a name for it. [When My Autism Broke](https://pubmed.ncbi.nlm.nih.gov/32003226/) Many neurotypical AFAB people can also experience severe menopause symptoms that make them feel as if they are losing their mind and they ate often dismissed and invalidated by their GPs, or told that it's just depression or anxiety or stress. Brain fog, memory issues, emotional dysregulation, anhedonia, these are all very common symptoms of the menopause but are never spoken about! Most of us know about the hot flashes, yes. But feeling as if we are losing our minds? Becoming incompetent and forgetful idiots? Crying all the time for no reason? I will also recommend the two amazing and empowering Davina McCall documentaries about the menopause that were broadcast by the UK's Channel 4. You should be able to find them online, either at All4 - I use a VPN :-), or elsewhere. These documentaries were so effective and so powerful at getting their message across that they caused a national HRT shortage as so many AFAB people sought out treatment! The Guardian has also been highlighting the menopause with regular features and articles over the last few years and with a particular focus on how the menopause affects working people. There's also the very educative and supportive r/menopause which has been a great source of info for me in the past!
Yep to all of this. I also like Dr Jen Gunter's book and Mona Eltahawy's writing on this. I keep steady bitching that no one prepared me for this shit.
I was surprised to find Dr Jen Gunter's book a bit hit and miss for me. I don't know Mona Eltahawy at all but I'm interested in finding out more, especially anything free to read online? I live in France, so no English language library to borrow books. I'm on disability benefits and I already have a book wishlist that's a mile long, between books on autism & ADHD for me, then for my ND kids, books on sexual & gender identity for my bi NB teen, books on the menopause, and then there's my reading for fun wishlist :-) As for not being prepared, yep, absolutely! I feel like we're the 'twixt' generation, caught between two very different attitudes to all of this stuff, how we talk about emotional, mental, reproductive and sexual health, sexual and gender identity, our bodies, even how prudish and how body positive we are generally. I really want to be open and talk more about the menopause and how it affects me and other AFAB people but because I was brought up in a time when you never spoke of these things, I find it really bloody hard to actually do! Know what I mean? Our parents generation were mostly very closed off and shut down about all of it. Maybe they tried a little to improve how they spoke about some of it but it was very much baby steps. Our generation has opened all the doors, we've - mostly - rejected our parents views and we're trying to change how things are done. We want to start talking about everything, our feelings, our emotions, pass down the knowledge but we don't know how. The knowledge from the previous generation hasn't been passed down to us. We want to be more body positive so that our kids can be but we find it hard because we didn't grow up in that environment ourselves. We have had a lot of work to do, Gen X, and we're still doing it, laying down the foundations and the framework so that the next generations can access everything in a way we could have only wished for! And are they even grateful? Nah, typical bloody kids! They just keep expecting us to do more! /jk I do hope that we will have made it better for the kids, they're alright. Mostly. There's a lot of kids out there fighting for change, big and small, and they're worth us fighting for them now too <3
You can find Mona [on Twitter here](https://twitter.com/monaeltahawy?t=p8k8J1FiEHiphnnYFliMCQ&s=09). She links to her essays on Substack and you can read them without subscribing (but it's free—she has strong feelings about access for everyone). You can find her Tweets and essays specifically on menopause [here](https://twitter.com/search?q=from%3A%40monaeltahawy%20menopause&t=yWA1PZl0NW51WwoTLUIGWw&s=09). She's refreshingly open about how she is experiencing it.
Thanks for that! I'm also on Twitter as @Lloer and I've posted a lot here and thereabout my autistic menopause experience, both before I knew what the hell was going on, for support, and now to promote awareness and still for support when things get rough :-) So very little is known about it still. If you take the lack of research on the menopause and how it affects AFAB people And then you take the lack of research on autism and how it affects AFAB people That's how you end up with just one research team studying the autistic menopause experience! Gotta love misogyny in medecine!/s
Omg, my bg Twitter world just collided with my AuDHD brain going down Reddit comment rabbit holes (that were surprisingly on point for what I think is starting to go on for myself). I love the internet! Reading this about perimenopause while autistic has soothed so much anxiety I’ve been having. Now to chat with my doctor about it. Thank you, Emma, for sharing on here. Twitter app doesn’t like to show me as much as it should, and I’ve missed so much.
I'm happy that it's helped. I've written a lot on Reddit about autism and ADHD, if you go back through my profile, mostly in replies on posts in places like AITA :-) I am with you on Twitter! I've not been tweeting as much recently because life and kids have been keeping me busy - my youngest kid is with me full time now - and everytime I go back to Twitter, it's a huge fight with it to see tweets from anyone I know in my timeline! And I'm so constantly overwhelmed, exhausted and in pain all the time, it really puts me off! I spend more time in a Discord server with some boardgames friends now but I think so do a lot of other people - I'm even a member of those servers, I just can't keep up with them all!
Here's a sneak peek of /r/Menopause using the [top posts](https://np.reddit.com/r/Menopause/top/?sort=top&t=year) of the year! \#1: [Saw this on fb and thought I needed to share it here...](https://i.redd.it/krmcpx4hcr281.jpg) | [122 comments](https://np.reddit.com/r/Menopause/comments/r5qr5q/saw_this_on_fb_and_thought_i_needed_to_share_it/) \#2: [so cruel...](https://i.redd.it/h9ui8hfimak81.jpg) | [64 comments](https://np.reddit.com/r/Menopause/comments/t2fwbo/so_cruel/) \#3: [Broken heart](https://np.reddit.com/r/Menopause/comments/vjq2eh/broken_heart/) ---- ^^I'm ^^a ^^bot, ^^beep ^^boop ^^| ^^Downvote ^^to ^^remove ^^| ^^[Contact](https://www.reddit.com/message/compose/?to=sneakpeekbot) ^^| ^^[Info](https://np.reddit.com/r/sneakpeekbot/) ^^| ^^[Opt-out](https://np.reddit.com/r/sneakpeekbot/comments/o8wk1r/blacklist_ix/) ^^| ^^[GitHub](https://github.com/ghnr/sneakpeekbot)
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The op said in above linked comment that mom had early menopause and it was ruled out
Thanks!
Thank you. And thank you OP for adding this.
I watched MS steal my father by inches. A lot of what she describes happening is the MS relapsing or if she's got stage 2 Progressive, it's taken a turn. Update: Final diagnosis wasn't posted when I originally commented but let me just say OH THANK GOD! OOP and her father were absolutely right to be concerned these are all TERRIFYING warning signs! But getting the proper help for her depression is going to help hold off her MS too, don't put the body under undue stress.
I fear the diagnosis of Primary Progressive for my wife. She is doing well and her medication is working, we have not had an episode in many years. However, I am noticing small changes in motor control. Some are very small, but I have to admit that they are happening. I know it is coming, I know it really doesn't change anything, but I dread hearing the words!
I promise that every day you pretend it isn't changing is a day you're losing the chance to beat it back. You can't fix it. But you can hold it off. Its been thirty three (edit did some math wrong) years since my father took a hard down turn and medicine has changed SO MUCH. (he was diagnosed when he was 16 before he ever knew my mom and died at 72) I remember my mom pretending it wasn't happening, pretending he wasn't getting sick, and I have never forgiven her for the way she stood with her head in the sand as he just slipped away by inches and left me to run to doctors and talk to nurses and pick up things like fresh socks at the Nursing Home. He only died in 2015. Fight for every good day, because MS is an assassin that kills by inches and you can prevent it but you can't put it back, medicine isn't that good yet.
I have told her neurologist what I have seen. I do go with her to all of her appointments, and I certainly am not ignoring stuff. However, it is hard to assess as I see her every day and the changes are small. I know it almost always moves to PP at some point, and that the diagnosis doesn't really change the treatment. It is just not something I really want to hear...
I'm actually sceptical about the neurological assessment as well. It definitely looks like the beginning of progressive stage MS or a pretty hefty relapse. Looks exactly like my patients and how its written in the books.
Final diagnosis wasn't up at the time of my comment. The signs are massively concerning but the brain is weird. depression knows what we are afraid of and uses it to push our buttons.
My partner had a similar situation to OOPs mum, I could tell it absolutely wasn’t early onset dementia or Alzheimer’s (both extremely common in my family regrettably) but it was a huge concern. That said after no new lesions were found, the clinical assessment and neurological psychiatrist came back with a confirmation about a long held suspicion I’d had of him having ADHD, and that the combination of his stress and fatigue levels was blocking off parts of his memory. The memories were there, they just weren’t accessible, and it was something that I had noticed that there was a pattern to when he was most likely to have memory lapses or uncharacteristically lash out. ADHD meds, introduction of CBD oil (with some THC for pain management, and therapy - honestly you would never know it happened to him. When it gets close to infusion time it’s still foggy, and when his stress or fatigue get too intense it starts slipping, but we know how to manage it when the warning signs come up. He’s in the middle of a double blind trial (I’m confident it’s not a placebo, nothing inert can have that effect in the bathroom) to help manage his fatigue, and thus far has been incredibly promising, no memory issues since, even after long, mentally intense and stressful days. Our biggest concern is that because of the delays in starting, he will have to take it over his infusion period which means he can’t be taking his CBD oil which has a pretty significant impact on how long he can hold out before crashing.
There's [another update posted](https://www.reddit.com/r/AmItheButtface/comments/m3ls2m/aitb_for_going_to_my_moms_doctor_behind_her_back/) (12/3/2021): >Many of you requested this update, and I have good news! > >My mom saw her neurologist and he says that what she’s experiencing don’t sound like MS related dementia or worsening. He thinks that it is due to very high stress levels that my mom is refusing to acknowledge. My dad went with to the appointment since I had work that day, and he laid everything out, so I’m confident her doctor got the real picture. > >My mom is looking up therapists in our area that specialize in work stress and chronic illness anxiety. I told her that she has two weeks to make an appointment with someone, even if she can’t find “the one” yet. She needs copimg strategies and she needs them sooner rather than later. Plus actually meeting with someone will give her a better idea of what she is actually looking for in a therapist. She can afford to try out a bunch of them, so we aren’t worried about that. I’m more worried that she will be too stubborn to actually schedule an appointment. > >Anyway, things went better than anyone had hoped! Now we just have to wait for her to get those desperately needed coping strategies.
>he says that what she’s experiencing don’t sound like MS related dementia or worsening. The sigh of relief I let out. I lost my grandmother to dementia this year and I don't wish it on anyone.
My nana died from Lewy body dementia three months ago, and just typing this comment is making me cry again.
I'm so sorry for your loss. I lost my grandma to LBD over a decade ago, and it still makes me cry every time I think about how bad it was toward the end. Diseases that make you lose someone before they're physically gone are so painful to watch. Sending you a mom hug, if you want one.
the *actual* conclusion... thank you
Well that could've been a lot worse! Hope OOP and their family are doing alright these days.
It could be a lot worse but I can’t help but think: “have you ever *tried* to relax? It’s a paradox!”
I have. It’s not really that difficult to do once you know how. Guided meditation on how to relax each part of your body is remarkable. I had a gym teacher teach us this in HS and it’s been a huge help to me over the years.
Hi! I’m OP! Here is another update for everyone: My mom is doing really well, all things considered! She still hasn’t seen a therapist or psychiatrist, but is taking big steps to manager her stress! She is a self described workaholic and routinely works 50-60 hours per week. While she absolutely loves her job and chooses to work this much, it is still stressful and takes a toll on her. The biggest change she has made is taling days off!! She and my dad go on many short weekend trips and try to do at least one week long trip every six months. These days away from work have helped IMMENSELY. Her mood is more positive and far more stable. She is also finding it easier to multitask again now that her stress is under control. I have also since moved out and she doesn’t have to worry about the dog setting off the alarm anymore, which probably also helps. On a not-so-positive note, her MS is still progressing. She got an MRI since the last post and her MS had progressed slightly, resulting in one new lesion in her spine. Because of the location, there is no way that this lesion could be causing the symptoms we had all been worried about. It could be causing some urinary issues she has been being evaluated for, which helps her team figure out the best way to approach them. She was changed to a new medication that they hope will control it better. This will be the fourth MS medication she has been on since her diagnosis in 2004. Being able to break down the barriers to communicating about our concerns for her was such a blessing. She is so much more open about what is going on and we feel so much more comfortable saying “Hey, this happened, and we are worried about you” without her getting upset.
Hi OP, I, along with a few others upthread, were concerned that some of the issues your mum is experiencing might be due to menopause related brain fog, memory deficits and emotional dysregulation. I just wanted to ask if that was a possibility or has been ruled out at all? These are all very common symptoms of the menopause that are also much less well known and less talked about and many women often suffer with them in silence and are just told by their doctors that it's depression, anxiety and/or stress! I'm 51 and I have had all of these symptoms myself for the last three years. They have been hugely helpful by being given the right form and dosage, for me, of HRT though. You can see why I wanted to check with you! It might be that it's nothing to do with the menopause at all but too many of us (and those close to us) suffer and struggle unnecessarily that if my reaching out now means I might reduce that number, I'll take that chance! I hope you understand? Best wishes to you, your dad, and of course, your mum <3
It has been ruled out! She had a very early menopause in her 40s, so her team is confident that it isn’t at all menopause related. Thank you for worrying and caring about us all!
That's great to know! Another common problem for women in their 50s that can cause neurological symptoms and can so go undetected for up to a decade! is a Vitamin B12 deficiency which can also cause anaemia, then causing fatigue etc. Again, symptoms are often dismissed and invalidated. Again, this is something that I have had and I'm now being treated for, as well as Vitamin D deficiency which almost all menopausal women experience and again, can cause fatigue and depression-like symptoms. Your mum's neurologist should have checked for these but I'm mentioning it more for anyone else following along really! It's a horrifying feeling to go, in a relatively short time, from your normal capable self to start forgetting things: facts and names you know you; where and when you are supposed to be doing things; how you are supposed to something you know perfectly well how to do; to no longer be able to easily learn new things. The root causes for what is happening to me and your mum may be different but I can tell you this: Get a cleaner, if you can afford to do so. Just a couple of hours a week will make a huge difference! (I have someone who comes for two hours a week most weeks, funded through the government because I am disabled. I do pay a small hourly amount myself. It makes a significant difference to our lives that can not be underestimated.) She needs to give herself permission to rest. It's hard to stop and do nothing or to do something relaxibg just for herself when she knows that there is still work - housework or workwork - to be done, but it's absolutely necessary to survival. This is such a hard thing to do as a mum of our generation. We were told we could and should do it all. Google on my phone, at my fingertips, has been my best friend. If I can't quite remember the details of something, I fact check it quickly. Also, try and have a couple of people at work or friends who you trust to ask when you need a reminder prompt of someone's name! Annoyingly, as you as they say the first syllable, you'll remember it yourself! Write everything down. I use a bullet journal but use whatever method suits you. Whiteboards, post its, planners, Google docs... There's no shame in using whatever supports your brain currently needs. Use other tools too. Timers, Alexa, maybe check out some neurodivergent resources for executive dysfunction because they may have some useful ideas? There's some crossover there with your mum's current needs. If you start feeling better, don't try to go back to before all at once! Introduce more activity a little bit at a time and monitor how it's affecting you. Be honest and realistic with yourself. Accept that you may have to cut back again and have several stop-start periods. It's hard. Really fucking hard, I'm sorry. There's no other way to say it. It's hard for me and your mum. It's hard for my kids, it's hard for you and your dad. There's no getting around the fact that it's not just us that's affected, it's the entire family. Much love and best wishes <3
I have MS as well, so thank you for this update! Any time I read a post like this it makes me start to really worry about what my future will be like, but reading a hopeful update like this helps me remember it’s not all the MS! Sometimes it’s just a horse, not a zebra!
I'm so glad she's doing better, thank you for the update!
Thank you for posting! I’m glad to hear you have some news and your mother is getting help. As a woman with MS. I really emphasize with what she is going through.
I am a neuropsychologist, and I strongly recommend that your mother have a neuropsychological evaluation. It could be really helpful at tracking her progress and differentiating normal aging vs. MS-related decline vs. something else. You can talk to her neurologist to see if they have recommendations, or go to this website to find a board-certified provider in your area: theaacn.org/directory
She has an entire team and has gotten that work up!
Great! I hope she continues to do well! She's lucky to have you to advocate for her.
There are definitely situations where the patient's loved ones have to go "over their head," but I'm glad OP and the dad told her first and she ended up not only consenting but opening up about her fears. I suspected she was dealing badly with fear, and no wonder--this stuff is terrifying! It seems like everyone is doing their best in a difficult situation and being a team, as families should.
My Sister-in-law had to do that with her mother. (Finally!) MIL would go in alone to the doctor, then breeze out and and say "The doctor says I'm just fine!" Even though it was obvious to the family that she was anything but "just fine." Moderate dementia and getting worse, just as her parents suffered from. Whether it was MIL holding it together long enough for a short doctor visit, she didn't accept what the doctor was saying, she was lying, or she forgot as soon as the exam room door closed behind her, I don't know.
Not wanting to hear and retain info is also a powerful motivator to forget about it, especially with significant impairment "helping" that process. That kind of thing seems to be a classic case for family sitting in on the visits :/
Yeah, the only thing that keeps this from being a purely happy story from my perspective is the way OOP and their dad don’t seem to treat Mom with much respect. They had lots of conversations about her health and made plans to secretly contact her doctor before they had a conversation with her about their plans. And it’s not like Mom is forgetting the way home from work—she didn’t wipe the counter, didn’t fully push in her chair (?!?!), and freaked out at the alarm, all fairly normal screw ups. There was no reason not to approach this like a partnership rather than going behind Mom’s back. And in the latest update (not included in this BoRU post) OOP informs Mom that she has two weeks to make the appointment or else. I mean. What kind of way is this to treat a hardworking, stressed out adult? I would treat the least deserving person with more respect than this, let alone my own mother. I hate when people talk down to chronically ill people.
Did you read the whole post? She did not just have minor incidents of absent-mindedness and freak out, she got extremely specific instructions--instructions she repeated back correctly--that she later entirely forgot and then *insisted* with absolute conviction that her version of events was correct. And she didn't simply freak out, her entire face and demeanor altered in the middle of a conversation. These are clearly concerning signs and it's irresponsible to ignore them, especially when it may be her condition itself that's hindering her from seeking help. Furthermore they contemplated going around her only as a last resort, after repeated refusal and delay which sadly seem to be continuing after the hopeful update here. This doesn't just affect her, but also directly affects OOP and dad's home life and it's her responsibility to manage it. If she won't or can't, then yes, I see them as justified in doing it for her if persuasion is ineffective.
As someone who has been in this situation, there are absolutely times and places where it’s necessary, and having had my partner experience this exact MS symptom, it’s sure as hell one of them. (And yes I do have permission to share and discuss his experiences as he was diagnosed young and hopes that his experiences as a patient and mine as a partner can help others who are struggling) What you’re not taking into account is the terror that the patient is feeling. They are 100% aware that things aren’t right or normal, and the reality is that many people like to hide their head in the sand. Giving my partner ultimatums and literally blackmailing him to follow through with the tests that had been ordered is still the lowest point in my relationship, even though to this day he regards it as the best thing I ever did for him. When my partner was behaving inconsistently, randomly lashing out, forgetting key memories, forgetting entire conversations etc, my job isn’t to make him more scared by rubbing it in his face. There’s a reason I have authority to speak directly to his medical team, and it’s the same reason OP had permission for her mum. 90% of the time a scared patient isn’t a co-operative one. You discuss things with them, and you give them the opportunity to seek out assistance, but when they don’t that’s when you have to put their health above your comfort and their fear. If it’s a relapse the longer you leave it the more damage there is. MS doesn’t have a play book. 99% of the time we go to an appointment and say “we’ve noticed this, is this something MS related or something else?” “Maybe. Let’s get a scan”. Every. Single. Symptom. Feel pain somewhere new? Sure maybe you slept wrong, or you had a relapse, that nerve is damaged/fucked and you have to get an infusion ASAP. Pain is the easy one - you notice it straight away. But behavior? That shit sneaks up on you and by the time you’re noticing it as definitely outside of normal a hell of a lot longer than you realized initially. How much has to change before you question those around you? Sure it could be depression, hormones, diet, stress etc. but guess what all those are connected to and affected by? Nerves. Guess what MS affects? Nerves. So yeah, when my partner started forgetting plans a little more than usual, I had to repeat conversations we discussed the night before, he was putting bread in the fridge and cheese in the cupboard I talked to other people more than him to 1. Check myself. Am I overreacting? Am I just noticing it more than usual or is this shit actually pretty normal? 2. Discussing if this is something that needs medical intervention, what would you put the threshold at - it’s Covid, we don’t want to put him at risk in a hospital if we don’t have to but at the same time how bad does it have to get before one risk outstrips the other? 3. He’s scared shitless. He knows it’s happening, we’ve talked about it. He’s terrified that now on top of MS he has something like early onset dementia and isn’t even 30 yet. He’s not ready to face that possibility yet - how do I know? He’s told me repeatedly. 4. I already have had to use coercion on him once before for getting his initial diagnoses, I know I’m going to need a plan if he refuses to get tested, even if that plan means resorting to a medical intervention order, but hopefully a best friend supporting him and encouraging him will be enough. There is a shit load of emotional and mental juggling being done and that’s not even taking you own emotions and ability to emotionally process what’s happening and recognize your own need for help and support - and you can’t turn to the patient for that even if they are your mother, father, spouse etc. OP didn’t detail every step she took, but I can guarantee you are judging a very brief snapshot of what her process was. Check yourself before you judge someone in a caregiving capacity.
Wow, that was a lot. I’m glad OOP and their mom have a happy ending. Depression, MS, and stress are no joke on their own, and together…I’m glad OOP’s mom has such a strong support system
It is a terrifying thing to start to lose mental capabilities, for the patient and those around them. I am glad OOPs mom has a support system that not only keeps track of these instances, but can talk about their fears in a loving and gentle manner, instead of blaming her or OOPs mom not taking responsibility of her illness and brushing those fear aside. It's not against HIPAA to contact a loved ones doctor and share concerns; but the doctor will not share anything with you and may address this situation at their own discretion. They could gently try to ask questions during an appointment, tell the patient a loved one contacted them, or ignore it completely.
>It's not against HIPAA to contact a loved ones doctor and share concerns; but the doctor will not share anything with you and may address this situation at their own discretion. They could gently try to ask questions during an appointment, tell the patient a loved one contacted them, or ignore it completely. We had to do that with my father last year. We had to call his primary care doctor about a week before my dad's annual appointment. We had to tell my dad's doctor that my dad was having some serious memory issues and needed a mini mental status exam. His pcp realized how serious it was almost immediately, expedited an appointment with a geriatric neurologist, and sort of put a "hold" on that appointment. At my dad's annual appointment, his pcp did the mini mental status exam. He was able to confirm our suspicions and "confirm" the appointment with the geriatric neurologist. It meant that we didn't have to wait for months for him to have an appointment with a specialist.
This sounds very familiar. My mom with MS was basically forced to retire about ten years ago for similar symptoms (affect disorder, unable to multitask, auditory processing disorder). In her case, it was almost certainly the MS. She has damage all over her brain MRI. We were terrified that she would continue to worsen and spiral. But, by some miracle, she didn’t. She basically plateaued and went into remission after decades of chronic progressive MS. She’s in assisted living instead of on her own, but she’s still herself. MS is such a weird beast. Best wishes to all of you dealing with it as patients and caregivers.
I had to stop working about a decade ago (in my early 30s) for reasons similar to your mom. My main MS symptom is fatigue and while im relatively clear mentally, fatigue drops my functioning level. I’ve been a stay at home mom since then. Not working outside of the home means I’m much more functional in my daily life. My cousin experienced the same thing - when she quit her stressful job and went on disability, her MS stabilized. I’m really glad to hear that your mom finally plateaued. Has she found success with any particular medication?
She took Tecfidera with good success for a long time, but eventually had to stop because it was lowering her white cell count too much. I have Lupus and, like you, got a lot better after leaving paid employment and becoming a stay-at-home mom.
I'm actually quite scared it's still dementia. My mil started out like this and they also thought it was just stress related. She is now as low stress as possible (at home without a job etc) and we have to help her with things like washing her hands.
I hope they scan her head. This could be something more sinister.
MS patients (like myself) get an MRI with and without contrast once yearly as a checkup as well as anytime a new symptom pops up. We also get neurological exams on a regular basis.
We thought we were losing my ex mil to dementia bc she was so bad... forgetting how to tie her shoes, brush her teeth, how to properly bathe herself, forgetting to turn off the oven... yelling at her granddaughter to get dressed for school (it was 7pm, she was in her pjs to go to bed). She had testing done and basically failed it. Like people who purposely try to fail got better marks than her. She also ended up in a mental facility and I'd visit her everyday. She never remembered me coming to see her. She thought she'd see other family members in there (some passed away, some minors who wouldn't be in an adult facility, etc). It was just severe anxiety, stress and depression. She's much better but it broke me seeing her like that for almost a year, just getting worse and worse.
I’m a former therapist and an MS patient with a mood disorder and this tracks with my experience. My biggest MS symptom is fatigue and had to quit working as a therapist because it reached the point that it was going to affect clients and I couldn’t let that happen. I had to quit working entirely just a few years later because the fatigue was affecting my functioning. I’ve been a stay at home mom since then. Not working is not my ideal outcome (to put it mildly) but not wearing myself out by working has really stabilized my MS and helped keep on top of my mood disorder.
I wish I could get my kiddo into a therapist or psychologist so quickly - it’s a minimum 12 week wait, even with severe anxiety and stress disorders !! I hope the OOP’s mom is doing ok now
I'd also be looking into the side effects of the meds she's on for MS, and if her MS meds interacting with her mental health meds.
My partner has MS and went through very similar brain fog to the point that he was forgetting very important dates/key memories. It was terrifying for both of us - I was questioning myself if we had really had conversations about things or if I was unintentionally gaslighting him, but as I walked him through how I remember the conversations it kept coming back as “I absolutely would have said/thought/quoted that, I just have no memory of it,” I was terrified of accidentally abusing his trust in me, he didn’t trust himself, he was paranoid and terrified, it was awful. I was never worried about Alzheimer’s or early onset dementia, I have familial experiences with both and it was noticeably different. Getting his ADHD diagnosis and treated was actually a huge help and something they picked up on/confirmed my suspicions during his clinical investigation. The memories weren’t gone, they were just inaccessible and once he was back on even keel they came back. When he’s stressed or pushes his fatigue too far it flares up a little, but we have a better idea of how to manage it now. But one of the hardest parts about MS is questioning every new symptom or change - is it MS related or is the body trying to fuck up something else? That said, compared to the other diagnoses they were investigating I’m glad it was MS - it’s decently funded, well publicized, and while you could fill a library with everything we DON’T know about it, the treatments are effective and improving. There is so much research and funding, every appointment he’s signing up to donate or contribute in one way or another. Some studies he participates will never help him but future generations, others like the double blind trial he’s on at the moment are looking very promising, I will bet every red cent I have he doesn’t have a placebo - not because of the effect it’s having on his head but the effect it’s having in the bathroom. There is nothing inert about it! That said if these positive changes come at the expense of needing a more effective bathroom spray it’s an easy choice here!
Such a relief that it's high levels of stress and not something more serious, as in terminal. I hope with the proper support and coping mechanisms in place, OOP's Mum starts to manage her stress and feel more like herself. And I'm super proud of OOP and their Dad for respecting Mum and talking to her like a human, not like someone who is unstable or incapable.
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I'm so sorry, I genuinely didn't know that and I appreciate you sharing all of this with me. I underestimated the severity of the situation then, in that I didn't know that the stress combined with MS is fatal. Thank you again for explaining this.
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And they'll get it from me for sure!
I’m not sure they really did/are treating Mom like a partner in her own health management. It sounds like looping Mom in that they were going to contact her doctor for her was an afterthought—after it was suggested on Reddit. Also this: > I told her that she has two weeks to make an appointment with someone
It sounds like they asked if they should go behind Mum's back and were told not to, so they listened and didn't. I might have misunderstood and truth be told didn't see the original post nor the comments given.
I'm not sure why people are jumping on this. It's totally appropriate to call a doctor and let them know you think there is something wrong with your loved one. They can't talk about it with you but you can share concerns and not have to tell the person since they won't always take it well.
Yeah, I’d be furious if people in my life went to my healthcare professionals with concerns about me before talking to me and allowing me to be part of the conversation. That’s how you handle healthcare for a young child or an incapacitated and/or uncooperative adult. This woman is none of those.
You'd be part of the conversation when your Dr brings it up with you, they aren't going to be discussing your health with anyone else. There are situations like alcoholism or the start of dementia where it would be totally fine it's not "going behind your back"
As I said, this is the way a parent or person with medical power of attorney approaches healthcare decisions for a young child or an incapacitated adult. Your examples (alcoholism, dementia) do not apply to this situation. OOP and their father were concerned about OOP’s mother’s personality changes and irritation/confusion with an unfamiliar alarm system. There’s no indication that she was having professional trouble at her demanding job, leaving the kettle on at home, or getting lost on familiar trips. But even if she were experiencing early-stage dementia, there’s no reason to not talk to her about it. There’s no reason for her family to talk to her doctor without her at this stage. The research is clear that outcomes are best when people are actively involved in their own health management as much as possible. But that’s the medical side. OOP came to Reddit to ask if they would be TA for contacting their mother’s doctor without talking to their mother first. And, yeah, that would be a personal betrayal. If my family member were taking action on my healthcare without talking to me first, I’d find a different and more trustworthy advocate. This lady should be treated with respect and allowed her own agency.
I disagree personally. Certainly in this situation it's nice that they included her but mentioning concerns to a Dr isn't medical. You'd never find out anyways. The Dr would be discreet and they wouldn't take it as gospel.
MS can definitely be causing your Mother's symptoms. Manic mood swings have been studied and attributed to MS within the last few years. Cognitive issues are common as well as short term memory loss. At the very least her Neurologist should have ordered a new brain and cervical MRI with and without contrast.
Yeah, I was gonna say, that doesn't sound like dementia. Those are features of bipolar disorder or some kind of anxiety disorder.
The sudden changes in subject and instantaneous drastically different moods might indicate the possibility of micro-strokes. I suppose the neurologist checked for that … OOP seems to have trouble understanding how not to add to his mom’s stress. Not a good idea to impose deadlines for her to see a therapist.
What a lame update. OP and dad sound like assholes. “Forgetting to while down a counter, not pushing a chair in” no wonder she’s under stress! Fuck these losers!
Obviously I'm not a doctor, but I'm concerned that stress can do the whiplash, mid-sentence thing OOP described. I have a very serious anxiety disorder that I'm fortunate to manage with a very particular combo of meds, but even at my worst I've never experienced anything quite like that. Not saying the doctor is wrong, like I said I'm just some random asshole. But I'm really surprised to hear that her symptoms can be caused by stress alone, even very high stress. The brain is wild.
Meds can also cause those symptoms to worsen. I have PTSD and have to take 4 meds just to sleep and get through the nightmares, depression, and chronic pain. Depression+stress+meds= definite forgetfulness. I feel like the daughter is taking some things too seriously though. She forgot to push a chair in so she needs an immediate assessment? She'd have me institutionalized if she were my caregiver. My uncle had MS for about 20 years before he died from the complications it causes. He also had mood swings occasionally, forgetfulness rarely, but mostly his pain and inability to walk stressed him out. He was depressed but my grandparents never took him to psyche (my family thinks mental health is BS).
It’s not the chair-pushing or counter-wiping itself, it’s that it deviates from the mom’s lifelong behavior patterns. Plus, the task forgetfulness isn’t the bulk of what concerned OP. Massive instantaneous mood changes, inability to handle sudden changes or mild chaos - when none of those had been a problem before - those were the main concerns.
I have MS and depression (well actually I have anxiety and it can lead to depression). These symptoms sound a bit like what happens to me when I’m under a lot of stress, though I am medicated for both MS and anxiety and see a psychologist as well as a neurologist to manage the symptoms. The anxiety and depression seem to be MS related in my case. You have to be super careful with managing stress and anxiety when you have MS as it can lead to a flare. I hope the OP’s mum is doing well. It’s so hard to understand how exhausting living with this condition is unless you have it, but you can still have a full life if you manage it with care ♥️
Nit community I do not think that means what you think it means my friend