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@Dechi They are cardiologists who specialize in heart rhythm issues (vs. other types of cardiac issues). So (for example) if you were having tachycardia, or any type of heart rhythm disturbance, they could run tests to see if your heart is staying in sinus rhythm vs. having an arrhythmia. Some...

I hope to talk to her later today and will tell her that all you guys from both boards send your best wishes. @erin, did you want me to ask her about sending cards?

I just posted an update in @LucyLouWho (Misfit Toy's) thread on the other board but also wanted to reply here since you tagged me @AndyPandy to let everyone know how she is doing. @LucyLouWho ended up calling 911 a few nights ago b/c she was in severe pain and couldn't move. She is in the...

Thanks @AndyPandy for tagging me but I take Armour Thyroid which doesn’t seem to be part of the recall.

@Rossy191276 I have been wanting to reply to your thread re: benzos (either here or on PR and found it here first) and share my experience when I worked in a hospital. When we had patients who were catatonic, benzos were the first line of therapy (and I just Googled this to confirm I was...

Thank you for the update @Rossy191276 and I am happy to talk further in the future via PM (on the other board) or by e-mail if it would be helpful. I am so glad that you are pursuing this and not giving up! Congratulations on going out into the backyard with the wheelchair and seeing the sky...

@Dial It In I haven't seen any of the conference but did Professor Maureen Hanson speak about Rituximab specifically (or about an autoimmune sub-group or misdiagnosed group)? I am curious what she said (but am not on Twitter or other places where it might be posted).

They are another name for the paraneoplastic autoantibodies (like the anti calcium channel one that I have). I would love to hear what Dr. Angela Vincent has to say about them, too. Is she presenting at the public conference or only at the private researcher part?

It will be in the future. IVIG is widely being used for POTS and MCAS but is just not published yet. It will be.

Rossy, I somehow missed your post back in April and the abnormality on my EMG (in 2016) was mono-neuropathy to the left phrenic nerve which showed it was only working at 57% at that time. The Neuro was very hesitant to release my test results (after telling me they were "perfect") and he got...

There is now a commercial test for this autoantibody through Cell Trend in Germany. To my knowledge you cannot test for this autoantibody in the United States. IVIG is now being used by many doctors for POTS in cases like mine in which they suspect the patient has Autoimmune POTS vs. another...

I think you meant "autoantibodies" (autoimmunity) and if so, then yes, I have experience with POTS, many different autoantibodies, high dose IVIG, and also Rituximab. I have a very long thread about it all on the other board (it's close to 40 pages now but goes off topic several times... and...

I don't think you should feel bad at all b/c you posted the video in good faith with no bad intentions! I have posted a few times thinking something was completely neutral, and with good intentions, but something got misunderstood or led to conflict when it was never my intention! I do agree...

I guess it depends how much knowledge the person already has re: the topic. I had never heard of the term "ME" prior to joining PR in 2014 (b/c the term "ME" is not used in the US) and I had barely heard of "CFS" until I was given that diagnosis in 2013 by a former PCP and began to research it...

I have to respectfully disagree and I probably Google at least 10-15 things per day as they come up on line (or in real life) so I can understand them and learn what they are. The first time I ever saw a protest with empty pairs of shoes it was for gun violence and each pair of shoes symbolized...

@Dechi, I totally missed this thread until last night and wanted to add my congratulations on your new house! That is so exciting! Let us know what to bring to your virtual housewarming party... ;)

This would be my #1 concern as well although I cannot remember if you have any history of allergic reactions @Dechi? My mast cell doctor told me that even if some day I was 100% cured of all illness, that I should never use a contrast dye that is iodine based (if there is another option) and I...

@Dechi, I have never had an angiogram but I was curious why your doctor ordered one for you? Was it Dr. Hyde or another doctor? Are you having chest pain or other cardiac symptoms?

Hi Rossy, I am glad that you got your tests back but sorry that they have added to the confusion (which I really relate to)! :banghead: I would trust the Mayo interpretation of results over a random lab. I disagree with Mayo re: treatments and do not endorse them. But their lab is...

Thank you for keeping us updated @TrixieStix and I was curious if you were having other improvements (separate from the fatigue not changing?) or is two months to soon to expect to see improvements?