After a 4 month wait I finally had my appointment with RP specialist and researcher Dr. B yesterday! Dr. B is the president of an autoimmune...
yep it's called Delirium. I experienced it myself in the hospital one time.
I used to feel this way at times, but in reality finding out I have relapsing polychondritis and not ME/CFS has not given me any kind of solace.
I'm happy to answer your question. Having had so many tests, and so many other conditions excluded I really did think that there was a high...
Was thinking tonight...how crazy that I was misdiagnosed as having a disease (me/cfs) that has no biomarker only to find out I actually have a...
@Albgirl Small Fiber Neuropathy (SFN) can cause muscle weakness as well and will not show up on an EMG. I have significant SFN in my legs and...
@MeSci *not in direct response to the article/link but I had been thinking about this today. I would be one of those people who was misdiagnosed...
https://www.wired.com/story/scientists-hate-the-nihs-new-rules-for-experimenting-on-humans/amp?__twitter_impression=true "This week, after...
@Jonathan Edwards Thank you for your input. It's very much appreciated. I too suspect that the symptoms the ME/CFS community labels "PEM" also...
@Jonathan Edwards I've been thinking about how I should approach my CFS diagnosis with the RP specialist when I see her next month. The doctor...
Who knew there was such a thing as "shelf toilets".
I came across this & found it interesting. "So my talk today is not about the importance of patient engagement in research. Rather, I’m...
Thanks. The rheumy who diagnosed me with RP and who had only just met me 40 minutes beforehand of course said..."You need to start doing aerobic...
QUOTE="Octogenarian, post: 32191, member: 559"]To me, that is the most profound statement in the entire discussion. I believe that most people...
Hmmm? I always just took "exertion" to mean anything beyond me laying down, being still, being quiet doing absolutely nothing whatsoever.
I am in the US and I didn't take it to mean "nausea". Never even crossed my mind. I took it to mean feeling "malaise" which is how I usually...
Yes! This is a major PEM trigger for me also.
Thanks. It's been quite surreal. While I am hoping that my ME/CFS diagnosis was wrong and that it's the RP (and possibly also Sjogren's) causing...
This doctor said Nope. I have... Hereditary Spherocytosis (a type of congenital hemolytic anemia) a rare genetic Complement Component...
I was officially diagnosed with Relapsing Polychondritis yesterday. I have been started on 5mg of Prednisone daily and I will also start taking...
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