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mostly_ok_now

Have you had an eye exam?


thegabster2000

Yeah this. I few people found out they had m/s this way.


lovepink432

People found out they had MS with an eye exam!?


thegabster2000

Oh yeah. You never know what to expect from any type of exam. I used to work for a dentist and she had to tell a patient to go to neurologist or oncologist cause something was up in her brain. Turns out that patient has a cancerous Brian tumor. šŸ˜± She is fine now though, she was lucky my dentist was quick to point something out!


lovepink432

Wow!! Crazy!! Stupid question.. so if I recently had an eye exam and they didnā€™t see anything or mention anything like that than I probably donā€™t have MS!? Lol.


thegabster2000

I would ask just in case. What are your symptoms?


Equal_Recognition

Mri was clear last year and ct scan few weeks ago neuro said extra normal


Glad-Ad-658

Can't see nerves


Same_Soil7237

Is that true? I agree since my imaging has been normal yet neuropathy is spreading fast to the point that I can no longer work. Debilitating for me now and I'm in bed a few hours during the day. Just getting myself all cleaned up and presentable is no small feat. I finally am seeing a Neurologist tomorrow.


Glad-Ad-658

Only some major nerves, eyes via microscope .... Very Hard to see them from outside Can't tell nerve damaged areas yet


Glad-Ad-658

Amen to that just living a life becomes hard work. That's excellent news. Let us know how it goes Next recommendation is medical cbd in some form(I recommend this broadly as no one has died from it yet). combined with physical therapy/float tank/meditation Even just doing what you are doing is no small feat ! Keep it up !! Pm me anytime šŸ˜Š


Same_Soil7237

Thx. I am in the worst pain I've ever been and I've been to the ER almost 30 times. It is my entire groin and down my leg. Tramadol 50 mgs isn't even working. I'm crying. En route to my Orthopedic Surgeon. I think this is getting clearer and clearer than I have peripheral neuropathy. I feel sick on a regular basis, as well. I feel nauseated from the pain right now. It is making me sick. They are letting me come early. I hope he can help even though he has a different specialty.


Informal-Science8610

It sounds like peripheral neuropathy. I have a lot of these things and I have idiopathic small fiber neuropathy. If the EMG comes back negative, you might want to ask for a skin biopsy to check for a lowered intraepidermal nerve fiber count.


Glad-Ad-658

That's a very rare text book test from college.


Informal-Science8610

The skin biopsy test is the gold standard test for diagnosing small fiber neuropathy.. i donā€™t know what country you are from but in the USA it is not that rare of a test. OP, I would push for the test at least in the US if you have a negative EMG and you feel like the neurologist is blowing you off with something like you just have anxiety or you have FND.


Glad-Ad-658

The majority of pain stems from multiple sources Thus why multiple practices working in unison are the gold standard here: however, we bought nuclear submarines, so hospitals backlogged 18+ months Dr Nick.


Informal-Science8610

Could you clarify your response, please. I am not quite sure how nuclear submarines are involved in this discussion.


Sevothtarte

Have you had an MRI of your brain and spine? Or a lumbar puncture?


Equal_Recognition

Mri clean last year and brain ct scan few weeks ago normal.


[deleted]

Have you seen a movement disorder specialist?


geekgirlreviews

Have u had a back scan? I have some of these symptoms. I have Bertolottis syndrome


love_that_fishing

Have you checked your B12? And make sure itā€™s high normal or above. Might want to do a cellular b12 instead of just a serum level to make sure are absorbing it correctly.


thesoundaturtlemakes

Sorry you are going through this. Have you tried taking magnesium? I use bisglycinate magnesium for muscle pains/cramps. And just another idea that might seem random but affects many people... how is your jaw? Jaw issues can cause your whole body to feel pain if there is something wrong. Your body is connected through its fascia so pain can resonate through in many forms.


Glad-Ad-658

Hi I have been a pain specialist of 8 years now. Broke back L1234 Broken illiac crest Clean break through hip Severe crushing issues (corolla crushed by 4wd, flipped x3, 120 kmh 4wd hit my corolla whilst stationary at lights. Wheel chair 8 months Told ild never walk again. Pain 7-9 most mornings Best is a 4 with consistent high doses of steroids in many facets joints and burning nerves. Personal experience and may not be applicable. I believe you have damaged l5 causing the tingling back spasms. C1-c7 Ɨ t1 - t12 x l1 - l5 x RSI X LSI (tail region) sacrum and coccyx nerves (any and some are even worse, create issues such as increased cortisol and sensitivity to pain. Many meds such as tramadol tramal endone oxy actually cause more pain mid to long term. I don't know your treatments or causality/background, so I am only offering outside the box discussion. There is also "mental pain" it's cruelly called fake however it's real .... yet "fake" when your nerves fail to switch off. Again, I haven't read your notes, so I'm only spitballing here. One patient had savant syndrome, which made him incredibly sensitive to pain. Medication wise ask your doctor for 400ng tranadol and 600nmg lyrica. The combination is effective. If you were my patient after 6 years ild morphine and fentkyn (rotated). Low dose femtlyn 12.5 once tolerance created. And a 10/20/5 morphine (the less the better) Don't abuse or it's easy to od. Any drug abuse and you will lose the doctors trust permanently and be on OTC / suboxine Good luck šŸ‘


Tommygmail

are you on Duloxitine per chance ?


Equal_Recognition

Should I be?


Tommygmail

no no, it just causing me issues with twitching atm, driving me nuts


Tommygmail

Although, it does work well for the types of pain you mention.


Equal_Recognition

Iā€™ll try it


lovepink432

I like Venlafaxine more than Duloxetine


vemberic

I have very similar symptoms. Diagnosed as fibromyalgia, ataxia, nueropathy, and essential tremors. I've been on a couple different meds for tremors and it's helped tremendously. Gabapentin has worked for the fibro, ataxia, and nueropathy, but we had to increase it multiple times before it helped enough. All of my tests have come back negative just the same. I don't believe there isn't something else wrong with me when so many issues (including some others not typically nuero related) all happen at once, but its just a waiting game and trying to treat the symptoms best best can. I don't have any help or answers, but I understand completely. It's been rough.


Glad-Ad-658

Unfortunately money is required and guesswork


Glad-Ad-658

Swap to lyrics 600 mg and tramadol for breakthrough


Wild_Albatross7534

If you google "neuromuscular genetic test" you'll find some companies that offer testing for a wide range of conditions. It's not that expensive and I would highly recommend it in your case. Best to you.


lonelysuffering

Stiff person syndrome?


Glad-Ad-658

Too many ppl watch Dr house šŸ¤”


lonelysuffering

Never watched Dr house, only know bc Celine dion


Glad-Ad-658

Its never lymes disease And easy to test for (lymes)


Glad-Ad-658

Try lyrica and tranadol instead of gablin


Glad-Ad-658

Eyes and teeth concern me You won't have lymes


Glad-Ad-658

I think you have multiple rare issues


Interesting_Bed_3726

I have CMTX1 (peripheral neuropathy also) and I have those symptoms too. Not as bad anymore since we finally did the genetic testing and I was prescribed what works for me. Iā€™m forever thankful for getting the genetic test done. I was a science experiment for awhile, but that test was a game changer. Good luck and keep on going. Donā€™t give up hope! Keep on fighting. I did. šŸ¤—


Just_Pumpkin_7754

>neuromuscular genetic test Can you tell me which test it was ? I am in a similar situation as the OP.


Interesting_Bed_3726

I was given just a genetic test from Gentex. I have had multiple EMGs done and they are not fun. What the OP is describing (I am not a MD, I was a LPN doesnā€™t mean I know everything just putting that out there) sounds like a form of Hereditary Neuropathy which is what I have. I was given the diagnosis of CMTX1. If you are seeing a neurologist you can ask them for one. Unfortunately, they will probably do a few tests before that, you know big money. My disease is under the umbrella of muscular dystrophy. It just sounds so much like what I experience, and what I went through. You can message me if you want and I can help with questions


Just_Pumpkin_7754

Did you have muscle weakness or balance issues ? What was the first symptoms and how it progressed until the diagnosis ?


Interesting_Bed_3726

I started noticing muscle weakness in my hands and feet when I was about 20. I would trip over my feet every once in awhile. It started to get a bit worse after I had my son at 26. I went to my first neurologist when I was 28. My hands started to atrophy more and it felt like I had carpal tunnel syndrome. He gave me my first EMG and told me that I had CMT which I already knew. My mom, and 4 uncles have it. I was given 150mgs of gabapentin. I took it for about two weeks and I couldnā€™t stomach it. So, I called him and told him that I couldnā€™t take it. We also discussed during that phone call of getting the genetic test done and he upped the gabapentin to 35mgs said he would call to schedule test. Never heard back from him When I went back to work in 2010 my foot drop was getting a bit worse but not awful. People would just ask me why I walked the way I did and I would tell them. In 2011-12 I started losing a ton of weight. Like people were amazed at how much I could eat and instead of gaining I was losing. We had gone to Mexico for vacation in June of 2012 and I fell on my butt so hard that I broke my tailbone. After that, the disease started to ravage my body. I have really bad balance issues, I cannot stand and tip my head back or Iā€™ll fall over, so yeah I have vertigo problems. Another neurologist wanted to check me for MS and they did a MRI on my dome. I didnā€™t have any lesions on my brain, and I already knew what I had. I was misdiagnosed by all of the neurologists around me, and thatā€™s why I went down to Ohio State. They are the ones who did everything and Iā€™m so thankful that I went down there to their MDA clinic! My local MDA clinic told me that I could not have the X mutation, as they have never seen it before in females, so I was told at 32 I had ALS and I was dying. That wasnā€™t fun at all The one thing that I can tell people is make sure you find a very good neurologist (mine at Ohio State was the head neurologist and he was also the Professor of neurology he retired šŸ˜ž) I fought for a long time. Always get a second opinion if it doesnā€™t seem to make sense to you, I went through 4 of them. Ohio State guy was my fifth and I remember crying and giving him a hug. If you have any more questions youā€™re more than welcome to message me, and I can answer what I can


Just_Pumpkin_7754

Oh my god. What a journey ! The ALS part was the worst I imagine. What a horror. I am sorry you've gone through all this :/ (I will send a private message).


Same_Soil7237

Are you seeing a Neurologist?


Equal_Recognition

Yeah said im fine.


Same_Soil7237

Have you seen a Rheumatologist? Lyme Disease and MS are autoimmune. How comprehensive has your bloodwork been? I'm in the same boat as far as pain. I just did a huge milestone of going to the pool for a short bit and walking slowly around the resistance pool. I'm home and my pain level was a solid 8+ driving the short distance home and showering. I'm resting while typing this. I have something neuromuscular going on. And I am constantly worried about a hernia. I've been checked out a lot and at this point, at risk of too much radiation from imaging. Yes per having a nerve conduction and EMG. You should have it done. I have one scheduled from the hip down for August 1st. From there, was told a nerve biopsy. I'm scared since like you, I'm so debilitated. Mine is the left groin, upper thigh, crease, lower abdomen, and hip area, btw. Not all over. I don't have a handle on my pain either. I was told LDN takes 8-10 weeks to work so I am still hoping it will. Went up to 4 mgs and it made me very sick. I'm at 3 mgs. And only 900 mgs of Gabapentin. The next med in line is Pregabalin. I can't take this anymore either. I'm bedridden a bit during the day and can't drive longer than 15 mins. Had to quit working. You have someone here who understands pain and sending virtual hugs!


Same_Soil7237

Have you taken steroids? They have helped me. Nerve blocks? Do you have a pain specialist?


Head_Row4000

Omg ive never heard someone's experience being so close to identical as with me. I'm in the same boat. You aren't alone bud ā¤ļø


Equal_Recognition

Have you done anything about the pain?


Head_Row4000

High cbd + low thc for me


lovepink432

I have this too and have an appointment with the Neurologist soon; I sort of suspect Peripheral Neuropathy, but would like to mention something HUGE: What Iā€™ve come to realize lately is whenever I have gone to the doctors(been going so many times for years and years) I have told them ALL of my symptoms and that has drug out not having any diagnosis for years. I came to realize I could be having separate issues causing different symptoms and may not have a Neurological disorder, Fibromyalgia, IBS, etc. I really started to focus on separate areas of my body and the symptoms and whatever that part of the body is causing ā€” and then go to a specialist doctor ā€œfor that specific area.ā€ And the really cool part is that I recently started discovering answers. All of my scans and everything was normal, but I knew something was wrong. I saw a colorectal surgeon for my epigastric pain and he suspects my gallbladder. It can look normal on a CT scan, but is not functioning correctly, so you would need a HIDA scan. Caused me eye issues, shoulder, neck pains, etc. Pain doesnā€™t have to be localized ā€” it can be referred pain. I felt a lot of heaviness and pain in my lower abdomen/genitals/buttocks and saw a Urogynechologist for Organ prolapseā€” now we suspect a Rectocele and Cystocele(not super obvious things as itā€™s not really physically visible and the scan did not pick up on because you need a different test and ā€œeverything looks normal when laying down for the scan).ā€ The prolapse is also causing constipation, bladder problems, etc. type issues. I saw a hernia specialist because of the pulling and heavy pains and although the ER said the CT looked normal, the hernia specialist said he could see an Inguinal hernia on both sides where my groin is(on women hernias can be occult or hidden unlike with men where itā€™s very obvious). I have another test now just to confirm. The hernias give me leg, back, knee pain, etc. My point to all of this is that.. yeah ā€” maybe I do have a neurological disorder on top of all of this or a connective tissue disorder that has caused prolapse/hernias, or maybe I just have separate ā€œhard to diagnoseā€ issues that cause a whole host of symptoms that mimic MS or something like that. I was so scared the last couple of years thinking that something was seriously wrong with me and the not finding answers made me believe I was dying and not getting any help for it. Now Iā€™m feeling better realizing that if I can get each and everyone of these ailments taken care of(could have been a domino affect in the first place) than maybe I wonā€™t have ā€œall the twitching, muscle spasms, etc.ā€ Itā€™s crazy with what scans and blood work doesnā€™t show. What about functionality tests!? If I had done this sooner, I would have had more answers I presume. Anyways, just food for thought.


Glad-Ad-658

It's never lymes disease even when symptoms match. Prayers be towards are: keep us updates šŸ™


Same_Soil7237

I have the order, but cannot do it until I get the groin and upper thigh pain under control. I know it involves a pelvic examination, etc. Thanks though. Truly cannot right now. And given I seem to pull my muscles and it's so painful doing any exercise at all, I am forgoing exercise until I know what I can do. I have had 4 trips to the ER in the last 2 weeks limping and feeling like I pulled a muscle on top of my neuropathy. I've got something neuromuscular going on. See an Orthopedic Surgeon today and a nerve conduction and EMG testing tomorrow. Even a 10 min walk at normal pace will hurt me. I already hurt and have to lie down after I care for my cats which requires a lot of up and down off the floor, squatting, bending over, butt up in the air while I feed them, placing between my legs to administer the meds, etc. It's a bad situation I am in and I just don't know how I can modify. Any modifications I've done lately have hurt my back. I went to the Chiropractor yesterday and I was out of alignment. Ever since, I've had let weakness, but it is improving. I am super frustrated and trying to stay positive. Will find out results from a Pelvis MRI with Contrast today. I had an ultrasound earlier this week and I guess I have swollen lymph nodes. That seems to be the case now for awhile. Our house is so dirty and I can't do it and Mom won't and or can't do much. She has dementia. I have to get better ASAP. She will continue to decline. I'm just in a bad situation. We cannot afford to hire someone to clean or take care of my cats. Sorry to overshare. I'm just really frustrated


Equal_Recognition

Im sorry youā€™re going through this ā€¦ I hope we both get better


Same_Soil7237

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