Sudden onset OCD in children who had a Strep A throat infection.
This syndrome (Strep causing OCD, and often psychosis with violent behavior toward self or others in children with NO prior psych history, is called "PANDAS"). I watched a documentary about this about a year ago (I think on YouTube) but sadly I do not remember what the film was called. What struck me was that these children were in different countries, every single last one of them was initially misdiagnosed by multiple doctors, and many of them got vastly better with IVIG. I cannot for the life of me remember if any of them also got Rituximab (and I think a few of them did) but I am not certain of this like I am with the IVIG.
Sounds like @Gingergrrl was given the diagnosis of ME/CFS by mistake.
My journey to this point (2013 to 2019) was long and complex, as I know it is with all of us! I was given the initial "CFS" diagnosis by my former GP out of pure ignorance and laziness. The term "ME" is not used in the US, only "CFS", which is why I am using it here. My former GP told me that I had "CFS" and that there was no treatment and recommended "counseling". I told her I was an LCSW/therapist myself and if counseling could cure my medical problems, it would have been a miracle, but I knew they were medical.
In spite of this I saw a psychiatrist and he fully assessed me and determined that I was not depressed, and that it was obvious I had a medical problem just from my super low BP (80/50 which dropped further when I walked, plus extreme tachycardia, and all kinds of abnormalities on blood work). He also diagnosed me with "CFS" which he considered a medical issue and not psychiatric. He referred me to an Endo who immediately figured out that I had both Hashimoto's and POTS (which were both 100% correct diagnoses) but even he felt that more was going on and that it was "CFS".
So with three doctors of different disciplines giving me a "CFS" diagnosis (and it made sense b/c it was post-viral following severe Mono/EBV just 10-months earlier) I believed it to be correct. Ironically the first doctor who said, "I don't think you have ME/CFS" was an ME/CFS specialist who is still my main doctor today. He said that I was one of the sickest patients that he had, and he did not yet know why, but he did not think it was ME/CFS (even though I had sky high EBV titers, very low NK cell functioning, etc, which matched his other patients).
Just a thought.... as there maybe a question mark over @Gingergrrl diagnosis of ME/CFS could it be possible that patients that have been treated with Rituximab successfully did'nt have ME/CFS ? And vice versa?
I have this same thought all the time and for me there are three possibilities:
1) The people who got better from Rituximab (like me) never had CFS to begin with.
2) The people who got better from Rituximab had both CFS and a separate co-morbid autoimmune disease (which may or may not be diagnosed).
3) CFS (or at least a sub-set of it) is autoimmune and the people in that CFS sub-set got better from Ritux.
To bring this back to RA (the thread topic), there are people with 100% rock solid diagnoses of RA who do NOT improve with Ritux and others with RA who achieve complete remission. So being a responder to Ritux (or any med) does not in and of itself confirm a diagnosis.
But IMO, those who respond, have B-cell driven autoimmunity at the core of their illness. What I don't understand is how Fluge & Mella misdiagnosed so many people as having ME/CFS (using research criteria, not using zero criteria like my former GP)? Fluge & Mella had responders in their Ritux study (even if not statistically significant) and I want to learn more about that group of people and what diagnoses they had? Were they ALL misdiagnosed with ME/CFS? This seems strange to me. I would love to know exactly how I matched up with Fluge & Mella's responders (all I know so far is that we all had a positive ANA titer, some positive Cell Trend autoantibodies, and anti-thyroid antibodies like TPO).
I am very interested in this b/c most likely there is going to be a case study published about my case in a medical journal (not about ME/CFS vs. how these treatments are successfully used for a variety of autoimmune diagnoses like Autoimmune POTS, MCAS, LEMS, etc) and I am also very interested b/c literally no one knows if my remission is temporary or permanent. I am continuing Ritux at a 5-month interval w/a goal to stretch it out to a 6-month interval. I am very fearful (still) of this remission not being permanent and being back in a wheelchair, with severe POTS & muscle weakness, unable to walk or breathe again, and being allergic/anaphylaxis to food again.