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.
I am happy to share and wish that I had my entire story in one cohesive place but don't . At this moment in time, my two main treating doctors (who I have worked with since mid-2014 and mid-2015) feel that my diagnoses are Hashimoto's Disease, Autoimmune POTS, Mast Cell Activation Syndrome (MCAS), and an atypical form of LEMS (Lambert-Eaton Myasthenic Syndrome).
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.
I agree with you that this is the case in the US and cannot speak to what is going on in other countries. But in the US, the term "ME" is not used and if you go to a doctor with vague symptoms (and they do not try to blame it on depression) then you are usually given a "CFS" diagnosis whether that ultimately turns out to be the correct diagnosis or not.
so: it can take quite a while to correct these things.
Definitely and it takes many months to know if you are a responder to Rituximab b/c it has to kill the B cells and you also have to wait for existing (fully grown) autoantibodies to die. Rituximab does not do anything to existing autoantibodies like IVIG does.
sorry to bother the thread.
You are not bothering the thread at all and if anything, I am am bothering the thread b/c Rachel just wanted to know how to contact Dr. Fluge! I apologize @redrachel76 for taking this off-track .
So that means that there can be responders in as early as 5-6 months (if I am understanding correctly)?