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Post-COVID Neuropathy/Yale paper
Post-COVID Recovery & COVID-19 | Last Active: Oct 11 8:44pm | Replies (53)Comment receiving replies
Sorta. After my PCP (of only 1.5 years after my PCP of 25 years retired) told me their practice wasn't even READING the google alerts I got and knew nothing about long COVID, I a) switched to a new practice and b) began looking for solutions. I saw the head of a major hospital's practice - one of the very few post-COVID docs in the area. I've seen him once where he, after my getting a 2 hour ultrasound and being told by a doc in his hospital system that I had lymphedema and referred to a fitter of wraps, I saw the post-C doc. He diagnosed some other things and gave me NO referrals except PT and massage therapy!
Not only is my neuropathy getting worse, the rash that I got with COVID has returned. The ER (2 visits), my then PCP, and the dermatologist I saw then (April - May 2023) did any lab work so there's no base line. My pain (severe spinal stenosis - and looking closely at the other pain post COVID) doc (laughing because I have never seen in my entire 77 years the total docs I see now!) who I'll see in person soon will look at all this. Next Mon. I will do a televisit w/ the post-C doc who doesn't seem terribly interested in studying me more.
Are we all case studies?
Replies to "Sorta. After my PCP (of only 1.5 years after my PCP of 25 years retired) told..."
I don’t think they care enough to use for studies. We’ve been left for dead. I can’t get any doctor to even discuss that my neuropathy is from Covid. I’ve had all the tests everyone gets and then they just assign me a possible syndrome for which nothing can be done. I just can’t believe that people accept this. I know there is nothing we can actually do seeing as Winsantor is using a GoFundme to try to even get phase 3. That drug is never happening. Seems suspicious since I see ads for drugs for the most obscure conditions
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Now I’m laughing at that. I think we are. Like lab rats. lol. I know I have chest pains. So bad at times I even sweat and vomit. Took over 6 months to get into a cardiologist. Then they did 2 stress tests (at hospital when rushed to er twice) at CAT scan, MRI and two ECHOs so far. Only a little thickening of the heart, yet I still get these attacks. Last one went into neck, jaw, left arm and back. I did bother going to hospital cause they say my heart is fine. My cardiologist said, go to er if this happens again. I asked, why? It’s a waste of my money. I think LC does things to you like ghost symptoms ( my term). Now the pain, neuropathy, joints, fatigue are all real and steady. I wonder if they have to catch the heart while it’s happening?? I have a halter monitor coming I am to wear for a month. To see is they can catch some of this. I have SVT. Prior problem and tachycardia is from COVID. So they are watching both of those too.