Shalynn, Well, it's really hard to say. Do you know exactly what tests they ran? Are they checking for LEMS too?

I am surprised at Mayo but not. Did they even mention or consider one of the congenital myasthenic syndromes?!!!! Dr. Engel is one of the pioneers in that field of study (at Mayo, Rochester). CMS is a group of genetic disorders that are present since birth. Some may manifest only later in life. There are literally hundreds of different mutations of CMS. A person can have either too much acetylcholine, not enough or none at all. They are NOT autoimmune diseases. It's important to define whether or not you have those since the treatments vary widely and immunosuppression will not help.

Sure, any nerve condition will eventually effect the muscles though that is more of a static weakness due to nerve destruction and not a fatigable one, as is the case in MG.

Have you had other tests like B12, Lyme disease, thyroid, mono, etc.?

Please bring up CMS to your doctor. There is a lab in Wisconsin that does CMS testing, in case you need to have a local doctor of yours order the tests "just in case" Mayo refuses to do so. They did that to me.

Good luck. I hope you can get answers soon. Oh, and B12 may not help a huge amount but it has been shown to help those with any peripheral nerve damage. Use the sublingual (under the tongue) methylcobalamin because it goes right to work in the blood stream/body and doesn't have to be converted by the liver first from cyanocobalamin into methylcobalamin.

Annie