1. < Post-COVID Recovery & COVID-19

Post-COVID Neuropathy/Yale paper

Posted by jeindc @jeindc, Oct 1 11:12am

I'm cross-posting this to the post/long COVID group since others there have posted post-COVID neuropathy. One day those of us w/ post-COVID will be understood and they'll find prevention or help. https://www.yalemedicine.org/news/when-nerve-pain-and-numbness-are-linked-to-long-covid

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

mlee5309 | @mlee5309 | Oct 8 12:44pm
In reply to @jeindc "Sorta. After my PCP (of only 1.5 years after my PCP of 25 years retired) told..." + (show)
@jeindc

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?

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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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jeindc | @jeindc | Oct 8 1:16pm
In reply to @mlee5309 "I don’t think they care enough to use for studies. We’ve been left for dead. I..." + (show)
@mlee5309

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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Yes, I think that they just want us to go away and stop kvetching. It is frustrating and were it not for this group to at least share and be understood, I for one would feel far more alone than I feel. Trying to explain to friends why I "look fine" (well, on Zoom and in person on rare times out) has nothing to do with how I feel. I'll be curious to hear what the post-C specialist has to say on Monday - if he has any new resources for me.

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yaya77066 | @yaya77066 | Oct 8 4:54pm
In reply to @jeindc "@yaya77066 - by chance did you have any bottoms of your heels peeling or blistering post..." + (show)
@jeindc

@yaya77066 - by chance did you have any bottoms of your heels peeling or blistering post COVID before the neuropathy?

Yes, walking from one room to another in our not-big-apartment is exhausting. I can tell I'm walking and 'feel the floor' too. It's that the burning wakes me often during the night.

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Yours is worse than mine. But I also wake a lot at night from restless leg syndrome which predates COVID by hears.

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jeindc | @jeindc | Oct 8 4:58pm
In reply to @kellysmail2016 "Now I’m laughing at that. I think we are. Like lab rats. lol. I know I..." + (show)
@kellysmail2016

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.

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Oh good "ghost symptoms" - trademark it!

Yes. It's like we are making these things up and we are experiencing them and no one hears us or they aren't learning enough quickly enough.

Today is a 'bad mouth day' - the canker-sore-like things in my mouth and my tongue is swollen. NEVER had this before COVID. I took allergy meds today - again - in hopes it might just once help. It doesn't.

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mlee5309 | @mlee5309 | Oct 8 6:36pm
In reply to @jeindc "Oh good "ghost symptoms" - trademark it! Yes. It's like we are making these things up..." + (show)
@jeindc

Oh good "ghost symptoms" - trademark it!

Yes. It's like we are making these things up and we are experiencing them and no one hears us or they aren't learning enough quickly enough.

Today is a 'bad mouth day' - the canker-sore-like things in my mouth and my tongue is swollen. NEVER had this before COVID. I took allergy meds today - again - in hopes it might just once help. It doesn't.

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I have some less painful symptoms that are absolutely wild like hyper salivating which is another one no doctor could even hazard why it is happening. They all told me to see a dentist. Shocker the dentist told me I needed to see a doctor. Meanwhile I have to have a spit cup all day every day. I had a few issues pre Covid now I have 100. It had to wreck my brain. It’s the only thing that is plausible to me at this point

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kellysmail2016 | @kellysmail2016 | Oct 9 2:22am
In reply to @jeindc "Oh good "ghost symptoms" - trademark it! Yes. It's like we are making these things up..." + (show)
@jeindc

Oh good "ghost symptoms" - trademark it!

Yes. It's like we are making these things up and we are experiencing them and no one hears us or they aren't learning enough quickly enough.

Today is a 'bad mouth day' - the canker-sore-like things in my mouth and my tongue is swollen. NEVER had this before COVID. I took allergy meds today - again - in hopes it might just once help. It doesn't.

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Oh no. Does it look like this?

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kellysmail2016 | @kellysmail2016 | Oct 9 2:25am
In reply to @kellysmail2016 "Oh no. Does it look like this?" + (show)
@kellysmail2016

Oh no. Does it look like this?

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Took me TWO months to get rid of it. Got it with the last Covid in June. Like a box of chocolates, lol, never know what you get. I always say every time I get it, it leaves me with a new present!! 🎁

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jeindc | @jeindc | Oct 9 11:17am
In reply to @kellysmail2016 "Took me TWO months to get rid of it. Got it with the last Covid in..." + (show)
@kellysmail2016

Took me TWO months to get rid of it. Got it with the last Covid in June. Like a box of chocolates, lol, never know what you get. I always say every time I get it, it leaves me with a new present!! 🎁

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What's interesting is that it goes away and then returns. Have docs said there's any 'logic' to it?

Thanks for using humor - it's tough to find w/ this. Today is another doc appt. for them to figure out if any blood tests or skin samples will tell them anything. I'd donate my body live right now to find answers!

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jeindc | @jeindc | Oct 9 11:24am
In reply to @kellysmail2016 "Oh no. Does it look like this?" + (show)
@kellysmail2016

Oh no. Does it look like this?

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It's hard to see - I DO have 2 things on one leg that appeared after COVID - my PCP said it's fungus and not to worry bec we all have funguses in our bodies. He did prescribe an anti-fungal cream to put on them -- and so far it's done nothing. The rash on my right leg has two looks: originally it was very red and bumpy - about 1" high and 4" around the inside of my right ankle. The rash on my thigh was much bigger - still red and bumpy (both little bumps) and on the part just above my knee to the inside of my thigh. I have photos and if I log in from my phone I can post them. NOW it's more like little liquid filled blisters only on my thigh not ankle. My thigh feels like it's swelling; my shin and calf are both very sore. Yes, concerned about possible blood clot. I also have a 5" long, 2" wide at its widest swelling on my right shin. It will all be looked at today.

My friends and I call what we are doing here "organ recitals" - they start every conversation after "how are you?" I told someone last night that THIS group (THANK YOU MAYO!) is the only place to discuss symptoms to find others who have them.

I wish I'd kept the screen/sign-in name of the person who had similar symptoms to mine and posted early on. Wondering if they ever got help. (In Vegas and I think a man.)

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jeindc | @jeindc | Oct 9 11:28am
In reply to @mlee5309 "I have some less painful symptoms that are absolutely wild like hyper salivating which is another..." + (show)
@mlee5309

I have some less painful symptoms that are absolutely wild like hyper salivating which is another one no doctor could even hazard why it is happening. They all told me to see a dentist. Shocker the dentist told me I needed to see a doctor. Meanwhile I have to have a spit cup all day every day. I had a few issues pre Covid now I have 100. It had to wreck my brain. It’s the only thing that is plausible to me at this point

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I have that too, @mlee5309 ! Ditto about who said to see whom. It is with the inside my mouth 'rash'. Eating in particular activates even more excess saliva. I'm seeing an ENT for the tinnitus and the saliva - since one doc thought it was sinus related. (I've had "sinus issues" my whole life. THIS is entirely different.) My first question to the ENT will be what they are finding that is with post-COVID patients - and if they are reading nothing (when the appt. was made, I was not given answers) I might just spend a shorter time there.

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