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I know that access to testing is a major issue but even without testing, I haven't found many people on PR or S4ME that match my set of symptoms. I have definitely found many people with POTS and/or MCAS, but the muscle and breathing weakness that I had doesn't seem to match with many people...

@Pibee Sorry I missed your post and didn't get tagged b/c I spell my avatar "gingergrrl" with two R's. I just looked at my Cell Trend results to answer your question and my M1 was 13.0 in the initial test and went up to 15.2 in the 2nd test. Both tests were prior to my treatment and we ran it...

Both of my doctors believe there is a very good chance that EBV (which I somehow managed to avoid until age 41 when I got mono) is responsible for my shift into severe autoimmunity today.

@Sasha Is the moment of silence on the 10th (today) like this thread title or the 11th (tomorrow) which I'd read in another post? Can you clarify?

Thank you and I appreciate you saying that. I don't want to take this thread off track but I think this is all okay since it is about autoantibodies (including the beta-adrenergic and anti-muscarinic in the study) and my feeling that these autoantibodies are very important and that I want...

Thank you for your detailed answer and I really am trying to understand all of this! I think someone like me could end up in a study like Dr. Scheibenbogen's (in theory, I do not live in Germany!) and could confound the results which would not be helpful for me, for the study, or for anyone...

I think I didn't explain it well but I think we are saying the same thing. In your scenario #1, there turns out to be an autoimmune sub-group within ME/CFS which is one of the options I was referring to. I did not state your scenario #2, but I agree with you, that this particular study may not...

I wanted to clarify that I didn't think that you personally were saying this vs. it that three Neuros told me in 2016 when we discovered I had the calcium channel autoantibody. I had (wrongly) assumed that the higher the autoantibody titer, the worse the symptoms, but they told me this was not...

Hi @Pibee, we've been discussing this on the other board but you brought up some really good points here (and I know many people no longer read the other board) so I want to reply. I think this is a really good point, that Dr. Scheibenbogen selected patients with very high B2 levels on...

Yes, thank you Luther for taking the time to explain all of that! I appreciate it.

I really, truly hope that she does keep looking and I believe there is a group of people with autoantibodies causing all kinds of unexplained symptoms from POTS & Dysautonomia to Autoimmune Encephalitis to Paraneoplastic Syndromes. I think this is an emerging field and right now most of these...

Thanks @MErmaid for saying that you enjoy reading my posts but I am not sure what you mean re: the silent majority not posting? I didn't post on S4ME for about 3 months but it was while my mom was dying of cancer and I realized I just could not keep up with two boards at the same time. But it...

I guess we have to agree to disagree on this one! Also, to clarify, I didn't mean that there were four categories of research vs. that I was just giving four examples that came quickly to my mind. I remember some very mean-spirited comments directed straight at him but I have no desire to...

Sorry if stupid question, but is a SFEMG always done above and below the eye or would it depend which body part they were testing? If they were trying to rule out LEMS or other autoimmune muscle illnesses, would they put very fine needles in different body parts (like arms or legs, etc)...

Absolutely nothing you said was disparaging and I did not take it that way at all and always enjoy reading your posts. I am still learning a lot of the common phrases from the UK that we do not use in the US but they are endless LOL. My science education was limited, too, and everything I now...

I think this is exactly what is frustrating to me b/c if we were just talking about a single study, then I understand saying that one particular study was done poorly. But it seems like whether the research is from the US, UK, Norway, Australia, Germany, etc, when I read about it on other...

Hi Ryan, I know you are asking Dechi, but wanted to also reply in case it is helpful. When I had an EMG (to rule out LEMS), the Neuro was not very nice and rushed me in and out and did a regular EMG and nerve conduction test. I did not have a Single Fiber EMG and was told it was not necessary...

This is my feeling as well, that there are distinct subgroups, and these researchers are working hard to figure it all out. They have to start somewhere and Dr. Scheibenbogen has no funding and is really a pioneer IMO. I have great respect for her and the fact that her study was small and...

@Dechi, I know it may be impossible to get these tests in Canada but I would get tested for the Myasthenia Gravis and MuSK autoantibodies and the LEMS (calcium channel) autoantibodies. I knew that muscle and breathing weakness were a problem for me but I did not realize HOW big of a problem...

I actually posted about Dr. Scheibenbogen's research on the other board tonight (great minds think alike @Mattie) but I am not sure why it is being dismissed over here? I understand it was a small preliminary study but it seems very solid to me that she has identified an autoimmune sub-group...