Yes Nightcrawler I have the same questions. My mother and 2 of her sisters had MG and now I'm pretty sure my sister has it. My treatment has helped but only about 50% improvement. My neuro hasn't even mentioned CMS.
Mike

The immune suppressants do not treat CMS, so seronegative people really should be told about it and tested. I wish they had tested my dad. If MG is rare, then adult CMS must either be highly under diagnosed or extremely rare, perhaps both.
nc

You have to reach a truly excellent, caring, smart and honest neurologist in order to understand how hard it is to diagnose and treat this illness and how limited the diagnostic tools are in differentiating among autoimmune MG and CMS, in less typical patients. Also, how much efforts and patience it takes to achieve even minor improvement. And how hard it is to get approval for less commonly used treatments.

You are probably correct that CMS is both rare and under-diagnosed. Like many other rare diseases, very little efforts are put into improving diagnosis or treatment options of this disease. It is much easier to "force" patients to fit into known "boxes" than to truly try and understand their unique illness.

Will let you know if I have reached that "ideal" neurologist come October. In all my readings on CMS, I haven't found a box that I fit into exactly although I have several " almosts". I also have the confusion caused by being the product of a long labor, fusion of C6-7 with osteophyte above, but supposedly normal cord. I never wanted to be an interesting patient
nc

I hope you do (find someone like that).

I know this is a little off of what is being talked about but, my internal med dr. is the one who dx me with MG. I have not seen a neuro. My doc is very intelligent. He started me on pyridostigm 30mg 4 x's daily. But should I see a neuro? I mean I trust this doc so far. I am having an MRI on my lower back for the pain I am having. I know I have MG, but I also think I have something else. Does MG cause lesions in the brain? I have a spot on my brain that has the demyllation disease. I got my CT scan from cking on my thymus. It is ok. Has anyone had it taken out(thymus gland) even if it didn't have a tumor?
I checked my local library, and not to my surprise no books on the subject.
There are so many forums, and I think I go in some and write something, then forget where I was. That is why I usually just read, but a wise person said, you will get more out of it if you participate.....I know that wise person is on here somewhere, but I apologize because I can't remember who it was........I'm glad I found you all tho..

First off Mestinon is like a band-aid. It does nothing to help in the long term. As for the removal of the thymus I think it depends on your age. In older patients it is not recommended. Thymus removal has had very mixed results. The thing about this disease is what works for one person doesn't work on another. I would continue seeing your doctor. Even if you do decide to see a neuro I would stick with the regular doctor anyway. I have 3-4 doctors that I see for various things. But trust and faith in your doctor is important I think.
Mike

I disagree with that. Some people do very well with mestinon for many years.
The big advantage of mestinon is it's excellent safety profile. As opposed to immunomodulating agents.
like you say, the optimal management approach is different for each patient. That is why it is important to have a physician you can trust, who is open-minded enough to stop treatment that doesn't seem to help, and switch to something else.
Some will do very well with a low dose of prednisone or other immunomodulating agents, and some who require high doses for prolonged periods of time may do better with symptomatic treatment, in the long term.
It is really a decision that has to be done on an individual basis, taking everything into account.
I don't know if it has to be a neurologist, as long as it is someone who has a good enough knowledge and understanding of the disease and is ready to take full responsibility, consulting others if required.

I was dxd with fibro over 10 yrs ago and live in constant pain. I began having eye issues 2 years ago, but didn't pursue it until it got worse this year & double peripheral vision developed. I was dxd with MG a month ago & currently take mestinon. I continue to take my fibro meds, but they were only ever an "as needed" situation. That pain has not subsided with the addition of mestinon. And I have no doubt about my fibro or mg dxs.

Also, regarding gluten free. I have been GF for nearly 3 years and saw NO change in my fibro. It's very hard as gluten hides in everything and takes a very serious commitment.