Post-COVID Neuropathy/Yale paper

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.

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!

That’s wild. Eating does the opposite for me. It suppresses it for a few hours for me before the tidal wave begins. Problem is my IBS only allows for one meal a day around 10:30am because it takes me nearly 12 hours to digest that or at least feel like that. I’ll throw in one more discovery in this process. I’ve had constipation issues my whole life. Always told to get a colonoscopy. Nothing ever came back wrong. I started getting B12 shots at the beginning of my neuropathy symptoms and my constipation has improved significantly. I’m about 52 now and have seen docs for constipation for 30+ years. Not one ever mentioned B12 as a solution. But Linzess and all the other bullshit RXs they were all in. Hard not to be jaded

Just a quick chime to both of you. I now have a swollen (golf ball sized) saliva gland and tinnitus. Also vitamin B12 deficiency (take shots) and gastric issues (IBS/C and D). All since Covid. Read a few things on all of this being LC related. I will look and post for everyone. The amount of symptoms go on and on. I made a list of 35 and I never even mentioned the little ones. It’s truly devastating. Drs do not know what to do with all of it. Treat the symptoms, like they are doing for me (not all of them yet) and now I’m on 19 medications plus oxygen. My cardiologist wants me to be admitted to hospital, take me off everything, and start over. He sent me a list of 69 different medication interactions that moderate to severe. Dang!!

That’s why Covid is so effective as a disease. The medical establishment has been siloed into so many specialists and unless you are Uber wealthy you can’t get them to interact in my experiences which is 4+ decades now. They aren’t even good at treating symptoms and it’s all they know how to try and do. Other than that it’s blood work imaging blah blah blah. Again I can’t get one of them to even consider mine is from Covid. But obviously it’s impossible for me to prove it is as well. I just know for me it is. I know it in my soul and after being dismissed immediately only to see years later a handful of people discussing it only further confirms my belief. Thank you for sharing.

So welcome. I understand. Only one Dr mentioned Long Haulers in 2021. My PCP. She said I was the worst case she had. Nobody else touched those words. Even my Covid Clinic that was for that. They started just studying us. Only took like 200 people. Then in 2024 it started to be discussed as long Covid. At first was only 3 months of symptoms lasting now years or life long. Again, lab rats. I’m begging for Disability to live. I think that’s the very least our government should do for us. They have now proved it is a disability but I’m still battling. 8 months almost and they are saying it could take 4 more just for an answer. Oh well. Thank God for my family. I worked from 13 to 55. I paid in my share.

I really appreciate you sharing. I am sorry you are suffering so badly. Getting angry makes my symptoms worse so I try to avoid it but when I read your pain and I know mine and then I see that they are taking 200 people to study it’s just so dejecting. I mean they “invented” a “vaccine” in 48 seconds but I’m supposed to accept that the medical industrial complex can’t fix this? I know they can but that they won’t because it’s more profitable for us to remain sick and they don’t give a fuck if we die. Thanks again and I hope you find even a scintilla of relief. I’ll let you know if I ever find anything that helps me but my next appt isn’t for a month

I really appreciate you sharing. I am sorry you are suffering so badly. Getting angry makes my symptoms worse so I try to avoid it but when I read your pain and I know mine and then I see that they are taking 200 people to study it’s just so dejecting. I mean they “invented” a “vaccine” in 48 seconds but I’m supposed to accept that the medical industrial complex can’t fix this? I know they can but that they won’t because it’s more profitable for us to remain sick and they don’t give a fuck if we die. Thanks again and I hope you find even a scintilla of relief. I’ll let you know if I ever find anything that helps me but my next appt isn’t for a month

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.)

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.