COVID vaccines and neuropathy

Thank you for being strong enough to speak truth to power. I have lived with severe painful neuropathy for years and now am developing other autoimmune disorders but I cannot get a dr to see me. If I get the vaccine there is a great chance my pain will increase and I am already living minute to minute.doctors refer me to other doctors who do not even examine me and ask me why am I there to see them - they can’t help me without even examining me. I was put in a room in the ER last night in severe pain because my hands are now frozen most of the day and my fingertips have gone from having paper cut feelings all day long to razor blades. I can’t use my finger cots any more because my finger are so swollen it makes my finger bright red then purple and I have trouble getting off. My lichen planus is now in my vagina and anus and clumps of blood are now coming out of my anus. If I call my dr they transfer me to a nurse who tells me to go to ER but both times they e stuck me in a room never examined me and let me know I could get dressed and leave whenever I’m comfortable. Last night my sister watched out of the window of my room while the doctor and nurses had a gabfest for almost an hour and whenever the doc saw my sister watching she’d turn away to go back to her buddies. After an hour of seeing no one I dressed and was leaving when I passed by the doctors computer room. The doc said that oh she was just going to check on me. I said oh and as we walked away she said I couldn’t help you anyway. Every Aurora office ER and Urgent Care are the same. My body is on fire inside but I have no fever so it’s not Covid. They are so disappointed when they ring that out. My eyes have become ultra sensitive with this happening that I need to wear sunglasses and put eye drops several times an hour. My lichen planus is also oral and my entire body but they cannot offer pain relief. Don’t know why they just can’t My left ear feels like a tennis ball is shoved in it but hearing tests show normal. Outside the Aurora buildings they have signs about heroes working at the hospital but I haven’t seen any heroes or even empathetic people. Just developed rosacea deep red and it keeps traveling further down my chest but there is nothing they can do because I am very sensitive to medication. I have stopped many times writing this because my hands are locked up and painful. My PCP asked for an hour meeting in 2 weeks but they cannot tell me what it is for. They did call back to say they needed an additional half hour but again I have no idea why. Sorry to ramble and thanks for listening.

So sorry you are going through this! Have you been referred to a Neurologist? Has anyone ordered blood work to check for Neurological syndromes and diseases? Any skin biopsies? I would seriously ask your doctors for a detailed treatment plan. If they seem lost and unmotivated to seek the answers you need, start looking for a new doctor. Maybe consider a video consult with Mayo? The one good thing about COVID is that video consults became mainstream and access to world class doctors became available to anyone with access to a computer and internet.

Also wanted to ask ... how did you get cases started? VAERS was very confusing to me. I will search the other sites and report mine as well.

I reported to Moderna first. They started the initial serious adverse event file. I continued doing the VSafe check ins and I was very specific with my feedback. They ended up contacting me.

Here is a link for how to report the reaction directly to Pfizer: https://www.pfizer.com/products/patient-safety/adverse-event-reporting-
Be sure to have your vaccine card when you call, as they will have specific questions for you. Also, they may ask for your physician's name & number.
Sue

I reported to Moderna first. They started the initial serious adverse event file. I continued doing the VSafe check ins and I was very specific with my feedback. They ended up contacting me.

So sorry you are going through this! Have you been referred to a Neurologist? Has anyone ordered blood work to check for Neurological syndromes and diseases? Any skin biopsies? I would seriously ask your doctors for a detailed treatment plan. If they seem lost and unmotivated to seek the answers you need, start looking for a new doctor. Maybe consider a video consult with Mayo? The one good thing about COVID is that video consults became mainstream and access to world class doctors became available to anyone with access to a computer and internet.

This happened to me too. I developed neuropathy 2 yrs ago after taking Levaquin. It improved after about a year and I was no longer on any medication for it. Other than occasional mild flares if I overexerted, it was a non-issue. I got the first Moderna shot Jan 5 and within 6 hrs my feet started to burn. Within 8 hrs it was nearly my entire body and it did not go away. I saw my PCP and said although neuropathy isn't an expected reaction to the vaccine there are too many unknowns to know. She wouldn't advise on the 2nd dose because there are too many unknowns. I ended up not getting the 2nd dose. Unfortunately I still have the neuropathy all over. I've searched my brain to find another variable to blame, but there just isn't one that I can see. I'm now back on gabapentin 3x a day. I did report this through the vaers system. I hope in time things calm and it's not permanent. Every individual is unique and rare doesn't mean impossible, which medical providers often forget. In no way do I want to sway anyone from the vaccine. We all have to choose based on our own health history, risks, etc. My family and friends who received it had no problems. But I did want to share my experience.

So sorry you are going through this! Have you been referred to a Neurologist? Has anyone ordered blood work to check for Neurological syndromes and diseases? Any skin biopsies? I would seriously ask your doctors for a detailed treatment plan. If they seem lost and unmotivated to seek the answers you need, start looking for a new doctor. Maybe consider a video consult with Mayo? The one good thing about COVID is that video consults became mainstream and access to world class doctors became available to anyone with access to a computer and internet.