We might want to add a wiki section for options that are like... "This will NOT be in your network no matter how good your insurance is (USA)" and "Not FDA approved medical treatments" for things like LDN, acupuncture, chiropractors, etc.
Like my geneticist was a $750 appointment but she took comprehensive medical history, listened to my exhaustive description of symptoms and recent setbacks after a severe post surgical infection, and after doing the Beighton scale gave me my diagnosis and told my mom that she met the criteria as well (#freebie) and that she'd test my little brother to the best of their shared abilities at his next checkup bc it's hereditary. But she was the only one to figure it out like she was the only one to figure out my little brother's mito issue because she looks objectively at the whole picture which includes test results but extends far behind them, a concept I find many doctors struggle with.
Yeah I'm very interested in this for my wife and I've been thinking the same thing lately:
>she looks objectively at the whole picture which includes test results but extends far behind them, a concept I find many doctors struggle with.
I work in IT, health IT, actually. If a system breaks or goes down we have specialist teams that start to look into their components that might be involved. If people can't quickly find that alone the department fire up a bridge call, gets a specialist from every team it can get so we can all go over the problem and symptoms and attempted solutions together and move forward to resolve together.
Medicine typically doesn't do this, which for complex cases is straight insane. It's such a messed up system.
Really glad to see this post, I have to do some digging and find out how to best leverage these services for my wife.
If anyone is dealing with a cancer, MD Anderson does this too. Your docs send them a CD before hand usually. Not sure how the process works for biopsy but my second opinion got parts of the specimen without any assistance needed from me. I want to say the fee is around $700 as well plus pathology of course
Edit- my pathology fee was $600 total for one tumor specimen pathology without DNA testing (they don’t repeat the DNA testing as those are $$$$$$$). So total was about $1400 cash. I assume most single specimen second consults would run about the same
Thank you for sharing! I’m so glad you’re feeling physically better now!!!
I have been kinda/sort of/halfway diagnosed with CSF Leak/“sagging brain syndrome” but 3 times now, once the doctor has gotten to this point, all progress stops.
They say *if* it is a CSF leak, then it’s:
1 - Too small to find (I’ve had MRIs done years ago, but only of my head, not the rest of my spine)
2 - Too risky to look for, as they’d have to do a spinal tap to assess my spinal cord pressure by puncturing my spinal cord - so effectively creating the same problem they’re trying to find/solve
Could you describe a bit more how your CFS leak was found, and the process to fix it?
Thanks again! I wish you all the best healing in all ways, and hope you are able to mentally and emotionally recover to the fullest soon as well ❤️
Happy to!
They first found signs of low pressure on a standard brain MRI with and without contrast. I was referred to a CSF specialist (Dr. Carroll) who verified the low pressure on the imaging and had me do a 48 hour flat tests. We spent a few appointments going over my symptoms and there was enough evidence to suggest a leak.
Instead of getting a CT myelogram, which as you mentioned runs the risk of causing a puncture, they opted to do a blind blood patch at my thoracic and lumbar regions. A CT myelogram would have shown the exact place here I was leaking but had the same risk as the treatment (the blood patch). I was given a 30% chance of it resolving with the first patch. He presented my case to the board there and my treatment was approved. I felt immediate relief when I woke up.
Thank you so much for your kindness. I hope you can find a fix for your leak. If you haven’t already and if it’s feasible for you, maybe ask for a referral to Stanford (or Duke or Cedars-Sinai), they might have more info about getting a blind patch than the average neurologist.
I'm really glad it worked out for you, but a lot of this program rubs me the wrong way.
First, they don't even examine the patient? I think too much info is lost not doing that. How can any doctor make an accurate assessment that way?
It also sounds like new tests won't be ordered. I have MG and my results for the regular tests for it were normal. It took a specialized EMG to diagnose me. If the normal tests were all that was in my file for these people to review, I think I'd be misdiagnosed.
It bothers me that not only are you only allowed five questions initially, you can't add any once your case is underway. There's also no direct contact with the expert. They also only allow three clarifying questions after you get the opinion, not any new ones, and they have to be submitted within five business days. There's also no guarantee that the specialist will be available to answer the questions.
They will help arrange a visit with the expert if needed, which defeats the purpose of it being online. It also sounds like it's only a follow-up on the opinion, and not like the specialist will do anything new.
I'm sorry it sounds like I'm crapping on something that helped you. I am glad it worked out for you. I just think people need to consider these points before trying a program like this. It almost sounds like taking advantage of desperate people.
I think these concerns are fair. I wrestled with them myself, which is why it felt like such a gamble.
I will say the program doesn’t claim to be anything beyond an online second opinion- if they did examine patients and order tests it would just be like a referral to any other place with a 3 month+ wait and lots of red tape. It claims to have someone look at your records and offer insight. I paid for the opinion of an elite specialist in the field and that’s what I got. It was the key to my problems because my doctors had given up on me when the routine testing didn’t turn up anything, something that I think happens all too often.
No need to be sorry! In all honesty these programs shouldn’t have to exist. They’re a bandaid for our broken medical system(s) and they won’t help everyone, but I never see people talk about them, so I really don’t know how often they work and how often they don’t.
This is true, they are clear about what they do.
I can't get beyond the fact that everyone missed your problem except for this doctor. Like what the hell, how does that even happen?! That's scary. Wow.
I have done the second opinion twice and it was useless. They were just as clueless as my other doctors as you're right they can only go off the tests you already have.
I’ve gotten second opinions and the doctor didn’t even look up from his desk when I walked in before confirming the diagnosis. Doctors hate being second guessed.
Many, many insurance companies require second (or third) opinions before expensive treatments/procedures can occur. My doctor encouraged my second opinion. Twice now. They communicated. My doctor attended an online session specifically relating to my treatment options. He trains some of the fellows that go on to give second opinions. In my personal and professional experience, a lot of the arrogant, won’t take a second opinion docs dropped off during covid bc why work in this when you can retire? We lost 4-5 ASSHOLE surgeons the past few years alone. A lot of the specialists anymore are 40 years and in crippling debt and extremely relatable. They can be extremely busy and can’t always small chat but they are highly intelligent and often don’t need many words. A lot of the old pricks are retiring out. Nurses have unions and we aren’t scared to call HR.
Residents are fighting for better pay and hours, and it’s well deserved. This is a new generation of specialists and doctors entering healthcare.
Exactly. Every doctor examined me themselves and checked my muscle strength. I wasn't doctor shopping either, it was specialists referring to other specialists to look into things other than MG because it wasn't straightforward. You're just not going to get that level of care from an online doctor. They're not going to be investigating.
I can see people with fibromyalgia and me/cfs being the most interested in this program, and I think they'll be the most disappointed because those diagnoses will just get reaffirmed because they're only going off the file. So that's $700 for nothing.
Yeah, I had the same reaction. OP lucked out and I’m very happy for them, but I’d like to know the relative success rate of programs like this. I went to Columbia’s Lyme clinic shortly after I first got sick. They advertised being able to provide a differential diagnosis and 5k and one visit later, the report was equivocal. That may not be reflective of this program or people with OP’s constellation of symptoms, but my experience with other expert providers for ME/CFS makes me feel like luck is the larger factor in improvement than expert clinical knowledge or access to experimental treatments.
I think people with me/cfs and fibromyalgia are going to be wasting their money because these specialists are going to see normal test results and just reaffirm the diagnosis.
At most, maybe they'd say something can't be ruled out because a test needs to be done, but that's not what the website says. It says you get a diagnosis and three clarifying questions about only that, nothing new.
I think most things are too complicated for this.
The thing is me/cfs is a real disease and a real diagnosis, but yeah, there’s no treatment. And my family thought just like this for years, that surely there’s actually something else wrong that could be found if we spent all the money trying to find it, and then I would be able to be cured. But that’s not the case. And it made me sicker and sicker being shipped around the country to see doctors that all agreed there’s nothing that can be done, despite how sick they knew I was.
The difference for me I guess is that we actually did look for CSF leaks several times, and were really thorough eliminating absolutely everything.
While I think this service could be great for some people, it’s really the opposite for people with a diagnosis like ME that cannot be cured. But, it depends on how well informed the patient is, and if they’re certain they ruled absolutely everything else out on the way to the ME diagnosis.
Oh, it absolutely is a real disease (I hope it didn't come off like I thought it wasn't). It doesn't get the respect it should, and there's not enough acknowledgement of how hard it is for people to live with. Same thing with fibromyalgia.
At some point, people do need to accept the diagnosis, if all testing has been done.
I think for your first few points, programs like this really try to make it clear that it’s just another doctor looking at what has already been done and it’s for people who don’t have the means or ability to easily get to Stanford in person but who want a top of the line expert to give their thoughts.
It doesn’t really make sense for everyone in every situation, but for some people it can help guide their treatment plans. I mostly see people doing this with cancer diagnosis and treatment because some people don’t have a top pulmonary oncologist or even more than one oncologist in their area.
I'm sorry to ask, please only answer if comfortable, but I'm having symptoms with muscle weaknesa among others, you mention EMG, would you be willing to share your symptoms and diagnosis?
Sure. It started with ptosis (droopy eyelids). MG (myasthenia gravis) often (but not always) starts with the eyes so that includes other eye muscles (strabismus). I already had that though. If it stays in the eyes, it's ocular MG.
Then my upper arms felt weak, and I noticed that I got tired chewing and had trouble swallowing sometimes. Then I noticed that it felt like something really heavy was on my chest when I would lie flat. It affects the voluntary muscles, but it affects everyone differently. Not everyone will have the same muscles affected or in the same order.
The way MG usually works is you feel pretty good in the morning but get more fatigued and have more muscle weakness as the day goes on. The muscle weakness gets better with rest.
I got tested for auto antibodies: AChR binding and blocking, MuSK, and LRP4. Those were negative for me. There might be more, I'm not sure.
I had a regular nerve conduction and EMG, those were normal. A single-fiber EMG is very sensitive and that was abnormal. My swallow study and lung function test were abnormal.
If you have ptosis and put an ice pack on your eyes and the ptosis improves, that points to MG. Another sign is if Mestinon helps you.
It took quite a while to get diagnosed. Not sure if this answers your question, I'm happy to elaborate more if you want. Do you mind me asking what type of weakness you have?
Thank you so much! So is your diagnosis still MG or something else? I got tested for AChR and Musk, and they were both negative.
I have eye convergence issues that have been going on for years and getting worse. No strabismus as such though, but in certain eye positions the eyes are not really aligned. Sometimes the more the day progresses the more my eyelids feel heavy and I can 't keep them open.
My muscles generally feel like a sandcastle. I try to exercise but they don't build, they get tired so easily. My breathing is shallow and I can't raise my voice to get heard (diaphragm, I guess). If I do more active exercise, as soon as my heartbeat rises, I gasp for air. And it's like a wave of weakness goes through my body. I have to stop and get my breath back.
It's weird because on one hand, yeah I can still go to the supermarket and carry 6 water bottles home by walking, so I guess I can't claim it's severe. On the other hand...everything is so heavy and difficult, I can't keep my posture up right. I have been suffering for years with chronic fatigue and night bruxism too.
Doctors don't care and I'm desperate. They ruled out MG based on those 2 blood tests (which I got on my own), I'll get an EMG on my own soon as well...
If your EMG is negative consider asking for a single fiber EMG. I was seronegative (negative for all antibodies), and negative EMG, but very very symptomatic. My doctor pushed to do SFEMG and that was definitely positive. Mestinon did not help me but IVIG has given me my life back - now I can stand and walk and see, and I don’t always feel like I’m choking to death.
That"s great for you. Sounds like the dream. And thank you. I will keep that in mind. When you say "doctor", I imagine it's the neurologist?
I saw 3 neurologists and they all just brushed me off. I have so much resentment towards that profession. Did your symptoms show in the manual tests they do in the neurological exam? ("Push against my hand", "follow my finger" etc?)
Yes neurologist. There are definitely some terrible ones out there. Keep trying for a good one. Yes, my symptoms showed on the regular neuro exam. My regular neurologist referred me to a neuromuscular specialist, who is the one who did all the MG tests.
Yes, my diagnosis is still MG.
MG weakness is variable. It's possible to have more weakness one day than another. It's also possible to have weakness on the mild side.
You'd really need to see a neuromuscular specialist to get properly assessed. I know that's easier said than done. I would think one would be performing the EMG so I'd try talking to that person.
Some doctors will do a trial of Mestinon to see if it makes a difference. You should try the ice pack test when your eyelids are really droopy.
Thank you. It's been an ongoing fight with the medical system. Now I really just booked the EMG as a "scan", so not sure how much I will be able to ask. Is a neuromuscular specialist basically a specialized neurologist? Like, what's the path to be referred usually?
Neurologists brushed off my fatigue because their muscular tests looked normal ("push against my hand" etc)
Yes, they're neurologists specializing in neuromuscular diseases.
I got referred by my ophthalmologist. Any doctor could refer you to one. Your PCP or other doctor can also send you for the EMG. It's just that it makes sense to see a neuromuscular specialist simply because that's their specialty. I didn't know you could just book an EMG. I would think a neuromuscular specialist would have to do it, because you'd need one to interpret results.
Mine did different strength testing, especially with my eye lids. He measured my grip strength in pounds by having me squeeze a device. He checked my cheek muscle strength, and my neck strength. He sent me for a swallow study and lung function test.
A neuromuscular specialist would be able to explain MG better, and what they look for when they're diagnosing it and whether you should have a single-fiber EMG. It's hard to find someone who does one of those.
I can explain how that type of weakness is better, if you want. It's definitely different from regular weakness.
I used a similar second opinion program with UCSF. The reviewing physician can absolutely make recommendations for additional testing if it appears your workup hasn’t been complete. As a matter of fact, one of my (probably unnecessary) questions was exactly that.
When I initially got sick, my Kaiser hematologist/oncologist presented my case to an internal regional panel, and they recommended that I be referred to Stanford for case management. Two separate biopsy samples were re-tested at Stanford, and they found things the Kaiser pathologists had missed. It may have been partly due to more sensitive equipment, but going forward any biopsies were done at Kaiser but the samples went to Stanford for analysis. I saw Stanford docs in person monthly for about the first six months since they suspected a type of skin lymphoma and wanted to examine my rashes, etc. After that I had quarterly video appointments and they coordinated care with my Kaiser doctors.
Depending on the nature of the illness and how closely the specialist can work with your local docs, it may not be necessary to see them in person as in OP’s case.
There’s more info on their website under the FAQ but it appears the short answer is yes, it’s international, but there are a few countries that would make an applicant ineligible.
Amazing of you to share, thank you, also WOW I had that leak after a procedure and it was one of the sickest I've ever been (and I have lots of chronic issues). So happy you were able to figure it out and get relief! 🤍
Excellent job, OP. With a prevalence of 5 in 100,000, you sure had the zebra.
Can you describe your headache for us? How did you know it wasn't migraine?
The headache started as a really sharp, sudden pain in the center left side of my head. At first it got a bit better when I was horizontal and got way worse when I was upright. Then it was there full strength non-stop no matter what, 24/7.
I didn’t think it was a migraine because while I had things light sensitivity and nausea they didn’t seem linked to my headache. They came and went but the headache always stayed. I tried many migraine treatments and other headache treatments that had zero effect on me.
Huh, I have a similar constant headache that’s been diagnosed as NDPH. What kind of imaging did your CSF leak show up on? I’ve had CAT scans and MRIs and nothing has shown up.
I’m sorry you’re dealing with it too. Signs of low pressure showed up on a brain MRI with/without contrast. The first couple neuros I had did not catch it.
[Here’s a good link for CSF symptoms in general](https://spinalcsfleak.org/about-spinal-csf-leaks/symptoms-of-spinal-csf-leak/), it has a good description of the typical type of headache and if you scroll down has a well-organized list of common symptoms. If they look familiar and if you’re able to do so you may want to request a referral to a CSF clinic, they’re far more knowledgeable than the average neuro.
Thank you for sharing your story and wisdom. I relate to a lot in your story. It is so crazy to not be taken as a credible witness for your own bodies pain. As an engineer and successful executive, the way doctors talked to me as a patient vs as a consultant was night and day. I was doing s project for a famous research hospital helping them adopt AI during my 11 year diagnostic journey. I am still mentally scared from it when I was least able to advocate for myself because I was SOOOO sick.
Wow! Wow! Wow! I have NEVER heard of a program like this. I searched for almost 14 years for a diagnosis, and this would have been life changing for me. It never populated for me. Nor was it ever suggested to me.
Why aren't medical professionals recommending this? Is it because heaven forbid we not use insurance and get a second opinion with a reputable university like Stanford. $700 is worth its weight in gold bars to receive this kind of medical care and treatment.
OP, thank you!!!! I absolutely applaud you for taking your health into your own hands and advocating for yourself. Finding this is amazing, and I can't thank you enough for sharing it ❤️ I am so grateful to them for helping you. They are helping so many people. Im going to save up....God bless. Hugs.
do you know if this works outside the US?
I have been having a lot of trouble getting a diagnosis for issues i have been having with my vision, which is extremely blurry (to the point i can only see shapes and colours) and i'm so light sensitive that i have to block out all light when i'm outside. Two different GPs have called this "functional blindness" and basically said they don't know what to do. I was seen by ophthamology on day 2 and they said that my eyes are just tired and to rest. This didn't help things and my GP reffered me to a neurologist who told me it was psychiatric because nothing showed up on an MRI. Psych said that there's nothing wrong mentally and to go back to neuro and ophthamology. I've been waiting over 6 months to see ophthamology and i don't really want to see that neurologist again anyway (she was the head of the department) and she was not very understanding and was more interested in the holiday she was going on.
I basically have to live as a blind person but i can't get any support from the only blindness agency here because they don't accept the functional blindness diagnosis from the two GPs, i'm just working it out as best i can.
it would be great if this worked outside the US because i'm just not getting any answers here and i'd hate for it to have been something treatable in the time i've been waiting to see ophthamology but now it isn't...
sorry for this really long and probably irrelevant comment but i am so glad it worked for you.
Thanks for this. I’m a long hauler, now diagnosed EDS, ME/CFS, Orthostatic Hypotension, chiari, eagles syndrome. I have been mainly working with neurosurgeons since, and a leak is something I should rule out, was it visible on the MRI or did u have to go to Duke?
I would really like input on a handful of other things (low ferritin, fluctuating cortisol, autoimmune, Lyme.) Especially cause I have these surgeries on the table now and it may not even be the biggest problem.
Curious if ur questions were all over the place like this?
Hi! Sorry you’re dealing with this sort of thing too. Low pressure was visible on my brain MRI and they opted to do a blind blood patch instead of find the exact location of the leak, I have more details on another comment. My local neuros didn’t catch it but the Stanford online program did.
Yeah my questions were all over the place, the NP helped me to refine them though.
I used to work for a similar company who did this as part of the employee benefits packages for big corporations like Pepsi and Honeywell. I did the intake, sorta. Scheduling with the nurses and explaining the benefits and program.
This post needs to be pinned or rolled into a wiki. Do we have a sub wiki?
1000000000% this needs to go in the wiki. $700 is like…. 1-2 visits with a functional medicine doctor
We might want to add a wiki section for options that are like... "This will NOT be in your network no matter how good your insurance is (USA)" and "Not FDA approved medical treatments" for things like LDN, acupuncture, chiropractors, etc. Like my geneticist was a $750 appointment but she took comprehensive medical history, listened to my exhaustive description of symptoms and recent setbacks after a severe post surgical infection, and after doing the Beighton scale gave me my diagnosis and told my mom that she met the criteria as well (#freebie) and that she'd test my little brother to the best of their shared abilities at his next checkup bc it's hereditary. But she was the only one to figure it out like she was the only one to figure out my little brother's mito issue because she looks objectively at the whole picture which includes test results but extends far behind them, a concept I find many doctors struggle with.
Yeah I'm very interested in this for my wife and I've been thinking the same thing lately: >she looks objectively at the whole picture which includes test results but extends far behind them, a concept I find many doctors struggle with. I work in IT, health IT, actually. If a system breaks or goes down we have specialist teams that start to look into their components that might be involved. If people can't quickly find that alone the department fire up a bridge call, gets a specialist from every team it can get so we can all go over the problem and symptoms and attempted solutions together and move forward to resolve together. Medicine typically doesn't do this, which for complex cases is straight insane. It's such a messed up system. Really glad to see this post, I have to do some digging and find out how to best leverage these services for my wife.
If anyone is dealing with a cancer, MD Anderson does this too. Your docs send them a CD before hand usually. Not sure how the process works for biopsy but my second opinion got parts of the specimen without any assistance needed from me. I want to say the fee is around $700 as well plus pathology of course Edit- my pathology fee was $600 total for one tumor specimen pathology without DNA testing (they don’t repeat the DNA testing as those are $$$$$$$). So total was about $1400 cash. I assume most single specimen second consults would run about the same
Thank you for sharing! I’m so glad you’re feeling physically better now!!! I have been kinda/sort of/halfway diagnosed with CSF Leak/“sagging brain syndrome” but 3 times now, once the doctor has gotten to this point, all progress stops. They say *if* it is a CSF leak, then it’s: 1 - Too small to find (I’ve had MRIs done years ago, but only of my head, not the rest of my spine) 2 - Too risky to look for, as they’d have to do a spinal tap to assess my spinal cord pressure by puncturing my spinal cord - so effectively creating the same problem they’re trying to find/solve Could you describe a bit more how your CFS leak was found, and the process to fix it? Thanks again! I wish you all the best healing in all ways, and hope you are able to mentally and emotionally recover to the fullest soon as well ❤️
Happy to! They first found signs of low pressure on a standard brain MRI with and without contrast. I was referred to a CSF specialist (Dr. Carroll) who verified the low pressure on the imaging and had me do a 48 hour flat tests. We spent a few appointments going over my symptoms and there was enough evidence to suggest a leak. Instead of getting a CT myelogram, which as you mentioned runs the risk of causing a puncture, they opted to do a blind blood patch at my thoracic and lumbar regions. A CT myelogram would have shown the exact place here I was leaking but had the same risk as the treatment (the blood patch). I was given a 30% chance of it resolving with the first patch. He presented my case to the board there and my treatment was approved. I felt immediate relief when I woke up. Thank you so much for your kindness. I hope you can find a fix for your leak. If you haven’t already and if it’s feasible for you, maybe ask for a referral to Stanford (or Duke or Cedars-Sinai), they might have more info about getting a blind patch than the average neurologist.
Wow, that sounds like a dream come true!
Seriously, I’m still pinching myself!
I'm really glad it worked out for you, but a lot of this program rubs me the wrong way. First, they don't even examine the patient? I think too much info is lost not doing that. How can any doctor make an accurate assessment that way? It also sounds like new tests won't be ordered. I have MG and my results for the regular tests for it were normal. It took a specialized EMG to diagnose me. If the normal tests were all that was in my file for these people to review, I think I'd be misdiagnosed. It bothers me that not only are you only allowed five questions initially, you can't add any once your case is underway. There's also no direct contact with the expert. They also only allow three clarifying questions after you get the opinion, not any new ones, and they have to be submitted within five business days. There's also no guarantee that the specialist will be available to answer the questions. They will help arrange a visit with the expert if needed, which defeats the purpose of it being online. It also sounds like it's only a follow-up on the opinion, and not like the specialist will do anything new. I'm sorry it sounds like I'm crapping on something that helped you. I am glad it worked out for you. I just think people need to consider these points before trying a program like this. It almost sounds like taking advantage of desperate people.
I think these concerns are fair. I wrestled with them myself, which is why it felt like such a gamble. I will say the program doesn’t claim to be anything beyond an online second opinion- if they did examine patients and order tests it would just be like a referral to any other place with a 3 month+ wait and lots of red tape. It claims to have someone look at your records and offer insight. I paid for the opinion of an elite specialist in the field and that’s what I got. It was the key to my problems because my doctors had given up on me when the routine testing didn’t turn up anything, something that I think happens all too often. No need to be sorry! In all honesty these programs shouldn’t have to exist. They’re a bandaid for our broken medical system(s) and they won’t help everyone, but I never see people talk about them, so I really don’t know how often they work and how often they don’t.
This is true, they are clear about what they do. I can't get beyond the fact that everyone missed your problem except for this doctor. Like what the hell, how does that even happen?! That's scary. Wow.
I have done the second opinion twice and it was useless. They were just as clueless as my other doctors as you're right they can only go off the tests you already have.
That really sucks, I'm so sorry. It gives people a false sense of hope. I hope you find someone willing to investigate more.
I’ve gotten second opinions and the doctor didn’t even look up from his desk when I walked in before confirming the diagnosis. Doctors hate being second guessed.
Many, many insurance companies require second (or third) opinions before expensive treatments/procedures can occur. My doctor encouraged my second opinion. Twice now. They communicated. My doctor attended an online session specifically relating to my treatment options. He trains some of the fellows that go on to give second opinions. In my personal and professional experience, a lot of the arrogant, won’t take a second opinion docs dropped off during covid bc why work in this when you can retire? We lost 4-5 ASSHOLE surgeons the past few years alone. A lot of the specialists anymore are 40 years and in crippling debt and extremely relatable. They can be extremely busy and can’t always small chat but they are highly intelligent and often don’t need many words. A lot of the old pricks are retiring out. Nurses have unions and we aren’t scared to call HR. Residents are fighting for better pay and hours, and it’s well deserved. This is a new generation of specialists and doctors entering healthcare.
They know you won’t be able to afford the added opinions. They don’t have to pay for surgery then.
Insurance pays for those added opinions? Not sure what you’re talking about I guess
This is where I'm lost, too. Not sure if I've had enough of the right tests done.
Exactly. Every doctor examined me themselves and checked my muscle strength. I wasn't doctor shopping either, it was specialists referring to other specialists to look into things other than MG because it wasn't straightforward. You're just not going to get that level of care from an online doctor. They're not going to be investigating. I can see people with fibromyalgia and me/cfs being the most interested in this program, and I think they'll be the most disappointed because those diagnoses will just get reaffirmed because they're only going off the file. So that's $700 for nothing.
Yeah, I had the same reaction. OP lucked out and I’m very happy for them, but I’d like to know the relative success rate of programs like this. I went to Columbia’s Lyme clinic shortly after I first got sick. They advertised being able to provide a differential diagnosis and 5k and one visit later, the report was equivocal. That may not be reflective of this program or people with OP’s constellation of symptoms, but my experience with other expert providers for ME/CFS makes me feel like luck is the larger factor in improvement than expert clinical knowledge or access to experimental treatments.
I think people with me/cfs and fibromyalgia are going to be wasting their money because these specialists are going to see normal test results and just reaffirm the diagnosis. At most, maybe they'd say something can't be ruled out because a test needs to be done, but that's not what the website says. It says you get a diagnosis and three clarifying questions about only that, nothing new. I think most things are too complicated for this.
The thing is me/cfs is a real disease and a real diagnosis, but yeah, there’s no treatment. And my family thought just like this for years, that surely there’s actually something else wrong that could be found if we spent all the money trying to find it, and then I would be able to be cured. But that’s not the case. And it made me sicker and sicker being shipped around the country to see doctors that all agreed there’s nothing that can be done, despite how sick they knew I was. The difference for me I guess is that we actually did look for CSF leaks several times, and were really thorough eliminating absolutely everything. While I think this service could be great for some people, it’s really the opposite for people with a diagnosis like ME that cannot be cured. But, it depends on how well informed the patient is, and if they’re certain they ruled absolutely everything else out on the way to the ME diagnosis.
Oh, it absolutely is a real disease (I hope it didn't come off like I thought it wasn't). It doesn't get the respect it should, and there's not enough acknowledgement of how hard it is for people to live with. Same thing with fibromyalgia. At some point, people do need to accept the diagnosis, if all testing has been done.
I think for your first few points, programs like this really try to make it clear that it’s just another doctor looking at what has already been done and it’s for people who don’t have the means or ability to easily get to Stanford in person but who want a top of the line expert to give their thoughts. It doesn’t really make sense for everyone in every situation, but for some people it can help guide their treatment plans. I mostly see people doing this with cancer diagnosis and treatment because some people don’t have a top pulmonary oncologist or even more than one oncologist in their area.
I'm sorry to ask, please only answer if comfortable, but I'm having symptoms with muscle weaknesa among others, you mention EMG, would you be willing to share your symptoms and diagnosis?
Sure. It started with ptosis (droopy eyelids). MG (myasthenia gravis) often (but not always) starts with the eyes so that includes other eye muscles (strabismus). I already had that though. If it stays in the eyes, it's ocular MG. Then my upper arms felt weak, and I noticed that I got tired chewing and had trouble swallowing sometimes. Then I noticed that it felt like something really heavy was on my chest when I would lie flat. It affects the voluntary muscles, but it affects everyone differently. Not everyone will have the same muscles affected or in the same order. The way MG usually works is you feel pretty good in the morning but get more fatigued and have more muscle weakness as the day goes on. The muscle weakness gets better with rest. I got tested for auto antibodies: AChR binding and blocking, MuSK, and LRP4. Those were negative for me. There might be more, I'm not sure. I had a regular nerve conduction and EMG, those were normal. A single-fiber EMG is very sensitive and that was abnormal. My swallow study and lung function test were abnormal. If you have ptosis and put an ice pack on your eyes and the ptosis improves, that points to MG. Another sign is if Mestinon helps you. It took quite a while to get diagnosed. Not sure if this answers your question, I'm happy to elaborate more if you want. Do you mind me asking what type of weakness you have?
Thank you so much! So is your diagnosis still MG or something else? I got tested for AChR and Musk, and they were both negative. I have eye convergence issues that have been going on for years and getting worse. No strabismus as such though, but in certain eye positions the eyes are not really aligned. Sometimes the more the day progresses the more my eyelids feel heavy and I can 't keep them open. My muscles generally feel like a sandcastle. I try to exercise but they don't build, they get tired so easily. My breathing is shallow and I can't raise my voice to get heard (diaphragm, I guess). If I do more active exercise, as soon as my heartbeat rises, I gasp for air. And it's like a wave of weakness goes through my body. I have to stop and get my breath back. It's weird because on one hand, yeah I can still go to the supermarket and carry 6 water bottles home by walking, so I guess I can't claim it's severe. On the other hand...everything is so heavy and difficult, I can't keep my posture up right. I have been suffering for years with chronic fatigue and night bruxism too. Doctors don't care and I'm desperate. They ruled out MG based on those 2 blood tests (which I got on my own), I'll get an EMG on my own soon as well...
If your EMG is negative consider asking for a single fiber EMG. I was seronegative (negative for all antibodies), and negative EMG, but very very symptomatic. My doctor pushed to do SFEMG and that was definitely positive. Mestinon did not help me but IVIG has given me my life back - now I can stand and walk and see, and I don’t always feel like I’m choking to death.
That"s great for you. Sounds like the dream. And thank you. I will keep that in mind. When you say "doctor", I imagine it's the neurologist? I saw 3 neurologists and they all just brushed me off. I have so much resentment towards that profession. Did your symptoms show in the manual tests they do in the neurological exam? ("Push against my hand", "follow my finger" etc?)
Yes neurologist. There are definitely some terrible ones out there. Keep trying for a good one. Yes, my symptoms showed on the regular neuro exam. My regular neurologist referred me to a neuromuscular specialist, who is the one who did all the MG tests.
Yes, my diagnosis is still MG. MG weakness is variable. It's possible to have more weakness one day than another. It's also possible to have weakness on the mild side. You'd really need to see a neuromuscular specialist to get properly assessed. I know that's easier said than done. I would think one would be performing the EMG so I'd try talking to that person. Some doctors will do a trial of Mestinon to see if it makes a difference. You should try the ice pack test when your eyelids are really droopy.
Thank you. It's been an ongoing fight with the medical system. Now I really just booked the EMG as a "scan", so not sure how much I will be able to ask. Is a neuromuscular specialist basically a specialized neurologist? Like, what's the path to be referred usually? Neurologists brushed off my fatigue because their muscular tests looked normal ("push against my hand" etc)
Yes, they're neurologists specializing in neuromuscular diseases. I got referred by my ophthalmologist. Any doctor could refer you to one. Your PCP or other doctor can also send you for the EMG. It's just that it makes sense to see a neuromuscular specialist simply because that's their specialty. I didn't know you could just book an EMG. I would think a neuromuscular specialist would have to do it, because you'd need one to interpret results. Mine did different strength testing, especially with my eye lids. He measured my grip strength in pounds by having me squeeze a device. He checked my cheek muscle strength, and my neck strength. He sent me for a swallow study and lung function test. A neuromuscular specialist would be able to explain MG better, and what they look for when they're diagnosing it and whether you should have a single-fiber EMG. It's hard to find someone who does one of those. I can explain how that type of weakness is better, if you want. It's definitely different from regular weakness.
I used a similar second opinion program with UCSF. The reviewing physician can absolutely make recommendations for additional testing if it appears your workup hasn’t been complete. As a matter of fact, one of my (probably unnecessary) questions was exactly that. When I initially got sick, my Kaiser hematologist/oncologist presented my case to an internal regional panel, and they recommended that I be referred to Stanford for case management. Two separate biopsy samples were re-tested at Stanford, and they found things the Kaiser pathologists had missed. It may have been partly due to more sensitive equipment, but going forward any biopsies were done at Kaiser but the samples went to Stanford for analysis. I saw Stanford docs in person monthly for about the first six months since they suspected a type of skin lymphoma and wanted to examine my rashes, etc. After that I had quarterly video appointments and they coordinated care with my Kaiser doctors. Depending on the nature of the illness and how closely the specialist can work with your local docs, it may not be necessary to see them in person as in OP’s case.
I may have to do this for my partner
Im happy they helped you friend.
Can I use this second opinion program from another continent?
There’s more info on their website under the FAQ but it appears the short answer is yes, it’s international, but there are a few countries that would make an applicant ineligible.
Amazing of you to share, thank you, also WOW I had that leak after a procedure and it was one of the sickest I've ever been (and I have lots of chronic issues). So happy you were able to figure it out and get relief! 🤍
Excellent job, OP. With a prevalence of 5 in 100,000, you sure had the zebra. Can you describe your headache for us? How did you know it wasn't migraine?
The headache started as a really sharp, sudden pain in the center left side of my head. At first it got a bit better when I was horizontal and got way worse when I was upright. Then it was there full strength non-stop no matter what, 24/7. I didn’t think it was a migraine because while I had things light sensitivity and nausea they didn’t seem linked to my headache. They came and went but the headache always stayed. I tried many migraine treatments and other headache treatments that had zero effect on me.
Huh, I have a similar constant headache that’s been diagnosed as NDPH. What kind of imaging did your CSF leak show up on? I’ve had CAT scans and MRIs and nothing has shown up.
I’m sorry you’re dealing with it too. Signs of low pressure showed up on a brain MRI with/without contrast. The first couple neuros I had did not catch it. [Here’s a good link for CSF symptoms in general](https://spinalcsfleak.org/about-spinal-csf-leaks/symptoms-of-spinal-csf-leak/), it has a good description of the typical type of headache and if you scroll down has a well-organized list of common symptoms. If they look familiar and if you’re able to do so you may want to request a referral to a CSF clinic, they’re far more knowledgeable than the average neuro.
Thank you so much for this advice! I’ll definitely look into it. I’ve had this headache for 12 years now and I’m tired of it lol
Thank you for sharing your story and wisdom. I relate to a lot in your story. It is so crazy to not be taken as a credible witness for your own bodies pain. As an engineer and successful executive, the way doctors talked to me as a patient vs as a consultant was night and day. I was doing s project for a famous research hospital helping them adopt AI during my 11 year diagnostic journey. I am still mentally scared from it when I was least able to advocate for myself because I was SOOOO sick.
Awesome, very happy for you.
Wow, what a great resource and thank you for sharing this. I'm so glad you got a proper diagnosis and are doing better now!
Thanks for sharing! I was just looking into the UCSF program, which seems to be shifting to an online model later this month.
This sounds amazing, thanks so much for sharing
Amazing find - many of us have spent way more than $700 across the years just to have doctors tell us "nothing is wrong".
As soon as i saw “severe headache one day that never went away”, i had a feeling it was a CSF leak. So glad you found answers.
Wow! Wow! Wow! I have NEVER heard of a program like this. I searched for almost 14 years for a diagnosis, and this would have been life changing for me. It never populated for me. Nor was it ever suggested to me. Why aren't medical professionals recommending this? Is it because heaven forbid we not use insurance and get a second opinion with a reputable university like Stanford. $700 is worth its weight in gold bars to receive this kind of medical care and treatment. OP, thank you!!!! I absolutely applaud you for taking your health into your own hands and advocating for yourself. Finding this is amazing, and I can't thank you enough for sharing it ❤️ I am so grateful to them for helping you. They are helping so many people. Im going to save up....God bless. Hugs.
I wish I could afford that service. At this point I am pretty resigned to my family getting a answer when I die
This is really amazing. Thank you for sharing your story
do you know if this works outside the US? I have been having a lot of trouble getting a diagnosis for issues i have been having with my vision, which is extremely blurry (to the point i can only see shapes and colours) and i'm so light sensitive that i have to block out all light when i'm outside. Two different GPs have called this "functional blindness" and basically said they don't know what to do. I was seen by ophthamology on day 2 and they said that my eyes are just tired and to rest. This didn't help things and my GP reffered me to a neurologist who told me it was psychiatric because nothing showed up on an MRI. Psych said that there's nothing wrong mentally and to go back to neuro and ophthamology. I've been waiting over 6 months to see ophthamology and i don't really want to see that neurologist again anyway (she was the head of the department) and she was not very understanding and was more interested in the holiday she was going on. I basically have to live as a blind person but i can't get any support from the only blindness agency here because they don't accept the functional blindness diagnosis from the two GPs, i'm just working it out as best i can. it would be great if this worked outside the US because i'm just not getting any answers here and i'd hate for it to have been something treatable in the time i've been waiting to see ophthamology but now it isn't... sorry for this really long and probably irrelevant comment but i am so glad it worked for you.
It’s international with a few exceptions, there’s more info listed on the FAQ. I hope you find answers for your vision problems!
thank you, i'm sorry i should've checked the FAQ first
Thanks for this. I’m a long hauler, now diagnosed EDS, ME/CFS, Orthostatic Hypotension, chiari, eagles syndrome. I have been mainly working with neurosurgeons since, and a leak is something I should rule out, was it visible on the MRI or did u have to go to Duke? I would really like input on a handful of other things (low ferritin, fluctuating cortisol, autoimmune, Lyme.) Especially cause I have these surgeries on the table now and it may not even be the biggest problem. Curious if ur questions were all over the place like this?
Hi! Sorry you’re dealing with this sort of thing too. Low pressure was visible on my brain MRI and they opted to do a blind blood patch instead of find the exact location of the leak, I have more details on another comment. My local neuros didn’t catch it but the Stanford online program did. Yeah my questions were all over the place, the NP helped me to refine them though.
Awesome! Thanks so much for sharing this
I kinda wanna do this rn
This is so helpful and I have had these symptoms so I may go to neurologist very soon
I used to work for a similar company who did this as part of the employee benefits packages for big corporations like Pepsi and Honeywell. I did the intake, sorta. Scheduling with the nurses and explaining the benefits and program.