So: what do you consider to be your diagnosis:? If you care to share..... I'm glad to find this discussion as I was curious regarding your positive experience @Gingergrrl, while the study came back: Rituximab didn't help.
It is atypical b/c I am not positive for the P/Q type calcium channel autoantibody (only the N-type), my muscle weakness was predominantly upper body vs. lower body, and my lungs and diaphragm were affected much more severely than most LEMS patients. I was also odd in that many with LEMS do great with Mestinon but I did not tolerate it at all and it gave me respiratory depression!
Every group debates these type of issues, re: who "truly" has the illness, (not just the CFS community!) and many people feel that only having the N-type calcium channel autoantibody is 100% diagnostic (without the P/Q type) if you meet the symptom criteria but others feel that you must have the P/Q type. There are also paraneoplastic (cancer) type of LEMS and Autoimmune (non-cancer) type of LEMS.
My main doctor feels very confident (since I have had three negative lung cat scans) that I have the autoimmune type and no longer have to worry about it becoming cancerous. He feels that I have an overall diagnosis of "Autoimmune Dysautonomia" that is much more encompassing than just "Autoimmune POTS". This term is given different labels by different doctors & websites (like "Autoimmune Autonomic Neuropathy", etc) but it is basically the same thing meaning that autoantibodies (created by B cells) are causing all sorts of autonomic problems.
In my case, I also have other autoantibodies (anti GAD65, anti-muscarinic/cholinergic and anti-alpha & beta adrenergic autoantibodies, etc) that can relate to different illnesses and make it all more confusing. Autoimmune Dysautonomia is an emerging specialty in it's very early stages (and two of the doctors who are very prominent in it, but I have never seen them, are Dr. Steven Vernino and Dr. Jill Schofield).
CFS just seems to remain the easy catchall term that isn't conveying much of whats actually going on.
@redrachel76 for taking this off-track .