Xanadu, MG is often mistaken for CMS and can be vice versa. Without the proper tests, you can't know for sure. And there are some congenital myasthenic syndromes where people have too much acetylcholine and Mestinon will make them worse.

Since you have so much going on in your family, it's worth asking for a referral. It stinks that there are only two places who can do the testing.

No, not all neuros know about CMS or even LEMS (lambert-eaton myasthenic syndrome).

CMS runs in families. Some of them are autosomal dominant, meaning you only need one gene (from one parent) to have it. Others are autosomal recessive, meaning you need one gene from each parent to have it.

So, yeah, if there is a dominant CMS running in your family, then it needs to be thoroughly investigated so none of you have to suffer needlessly.

This stuff does get missed.

If you need to know specific doctor names who deal with this, let me know.

Annie

Xanadu, I found this info for you because I noticed in another post that you are from Australia. If you ever want to find a doctor for a specific disease, you enter the disease in PubMed along with the city or country.

http://cmsluke.blogspot.com/

http://mdaustralia.org.au/about-md/fact-sheets/

http://mdaustralia.org.au/about-md/s...in-your-state/

http://mdaustralia.org.au/contact-us/

http://cat.inist.fr/?aModele=afficheN&cpsidt=1277590

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1288244/

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=3

And this one is from South Wales, Prince of Wales Hospital.
Maybe call this hospital and ask if they do the specialized testing.

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=2