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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 research institute and only sees patients for half a day one day a week thus the 4 month wait to see her. She was as great as I had hoped (and heard) she...

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 probability that ME/CFS was the correct diagnosis. I met the criteria and the disease described my symptoms well and my experience matched those of other...

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 different disease (RP) that also has no biomarker. How many known diseases (excluding mental illnesses) are there that have no known biomarker? Should...

@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 as a result I have pronounced muscle weakness in my left leg. The muscle weakness becomes especially obvious when I have to walk up an incline or up...

@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 (rightfully) with ME/CFS. I say "rightfully" because based on my symptoms, and very thorough testing (tons of blood testing of which my NK Cell...

https://www.wired.com/story/scientists-hate-the-nihs-new-rules-for-experimenting-on-humans/amp?__twitter_impression=true "This week, after almost a decade of work, some new rules go into effect for researchers funded by NIH. If they’re using human beings in their experiments, most of them now...

@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 occur in other conditions. Perhaps myself and some others in this group are proof of that? Before I was diagnosed with or even knew about ME/CFS, my...

@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 I'm seeing is the President of the Benaroya Research Institute. "Benaroya Research Institute at Virginia Mason (BRI) is one of the few research...

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 interested in a broader, more critical discussion. In addition to asking ‘how do we do it better’, I propose we also need to ask ‘why do we do it at all’ –...

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 exercise. Lots of people with Fibromyalgia feel bad when they overdo it". Whoa doctor why hadn't I thought of that over the past 3 years!! (cue...

QUOTE="Octogenarian, post: 32191, member: 559"]To me, that is the most profound statement in the entire discussion. I believe that most people look upon malaise as a psychiatric symptom. I've never understood why people who have exertion-induced (not exercise-induced) muscle weakness and...

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 describe what "sick" feels like when I have PEM.

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 my fatigue and PEM I guess I won't know for sure unless the medications I'm put on improve those things. There are a couple people in the RP groups who...

This doctor said Nope. I have... Hereditary Spherocytosis (a type of congenital hemolytic anemia) a rare genetic Complement Component deficiency I was born with 2 extra ribs (bilateral cervical ribs) causing severe Bilateral Neurogenic Thoracic Outlet Syndrome Endometriosis Adenomyosis...

I was officially diagnosed with Relapsing Polychondritis yesterday. I have been started on 5mg of Prednisone daily and I will also start taking either Plaquenil or Methotrexate soon as well. Doctor yesterday said that I am a great example of "Hickam's dictum". Tell me about it!