COVID vaccines and neuropathy

Do you mind telling me what they finally diagnosed you with and what treatment they are giving you? Is it working? Please tell me there is some hope. I would like to ask my doctors to look at whatever you were diagnosed with to see if that is my issue.
It has been just over a year since this all started, it has completely changed my life and I am starting to lose hope.
Thank you.

Hello, I'm not sure if this is allowable or not, but I wanted to share my experience and see if anyone else has experienced this because I am at a loss and can find no answers/help anywhere.
I am a 55 year old female who has a history of fibromyalgia for 15+ years but was not taking any medication for it. I was living an active life other than the normal pain from fibromyalgia that I had gotten used to and accepted. I was required to get the covid 19 vaccine (Pfizer) in January 2021 in order to keep my job because I work for a nursing home company (even though I work from home). 5 days after the first dose of the vaccine I started having a vibration (feeling of cell phone vibrating) in my right hip. I thought it was a pinched nerve and after about a week or so when it didn't go away, I went to see a chiropractor. While being treated by the chiropractor, it came time for my second dose of the vaccine. Not thinking my issue was related to the vaccine, I received the second dose of the vaccine (again in order to keep my job). After the 2nd dose of the vaccine, I started getting numbness and tingling in my feet that did not go away and my entire body also vibrated every time I looked down.
Over the past year the numbness, tingling, vibration has spread to my entire body (I even feel it in my face and head now). It is constant and does not go away. My balance is very bad where I walk with a walker or cane when going out and I feel cold on the inside down to the bone. I also am now having stomach issues for the past few months. I have had 9 MRI's, a lumbar puncture, a nerve conduction study done on all four extremities and all of the normal lab workups. The lumbar puncture showed increased protein in my central nervous system, but everything else is not showing anything that would cause my symptoms. I have been to 2 different MS clinics and to 6 different neurologists and have yet to get a diagnosis or a treatment that works.
I work on a computer for a living and was off work due to my hands and fingers being numb and tingling constantly that made it very difficult work. When my FMLA ran out and even though my doctor stated that I was not able to work, my employer (who required me to get the vaccine to keep my job) on 11/1/21 denied my personal leave and stated I would be terminated on 11/5/21 if I did not return to work full time by then. I did not want to lose my job and honestly couldn't afford to lose my job, so I asked the doctor to let me try to return to work. I am currently working but having extreme difficulty and not sure that I'm going to be able to continue much longer. My doctors are doing a skin biopsy on 1/31/21 but have said if this does not show anything they do not know what else to do. Based on my reflexes they state they know something is going on, but they don't know what it is or how to treat it. I am desperate and am putting all of this out here to see if there is anyone else dealing with this and if so, what they were diagnosed with and how and if their treatment worked.
Any help anyone can offer would be greatly appreciated. I have not been able to get any medical or legal help from anyone with this and I don't know where to turn.
Thank you.

@debmitchell101614 thank you for sharing. My experiences have been remarkably similar to yours. My struggle for answers has been unsuccessful. I feel like I am fighting on my own most of of the time, as my neurologist is not invested in my situation. You mentioned that the docs say there’s a problem with your reflexes. Are they hyper- or hypo-reactive? Mine are overreactive, which is troubling. However I have had cervical spine issues for quite a long time and I believe this could contribute. At times I’m convinced I have MS although MRI said I don’t. I’ve asked my MD to do lumbar puncture, which he didn’t choose to do. I may have to insist although I’m not sure if one year post it would be as useful now. At times I am very fearful of ALS also, which an EMG did rule out but I now worry that it may have been done too early. They said my EMG indicated pinched nerve root at S1 and are trying to attribute my many and varied symptoms to that. I’m very doubtful as I’ve had back problems for years and just overnight developed these other symptoms. I have strange sensations, twitching and spasms. This has been the worst year of my life, and it should have been the best. It does help to read others’ stories. Very best wishes for you!

I have been diagnosed with CIDP and I am currently being treated with IgG infusions. Today was my third dose so I am not sure if this will help. Stay strong and always look for more information, we are learning more everyday regarding the vaccine. My prayers are with you.

@debmitchell101614 , I’m so very sorry you’ve not found answers and that your boss is heartless.

I developed neuropathy last year, which was diagnosed by a neurologist as being caused by Sjogren’s Syndrome. After receiving the Pfizer vaccine, my neuropathy increased significantly. My neurologist said that I had a Sjogren’s flare up due to an autoimmune reaction to the vaccine.

I’m just a patient, but I’m wondering why no one at the MS clinics didn’t suggest that you may have had a similar reaction due to having fibromyalgia. Do you see a rheumatologist?

I hope you find answers and help soon.

Have you requested FMLA leave from your employer? FMLA provides 12 weeks of job protection while you recover. My 30-year career was also in jeopardy. My nerve damage/symptoms from an autoimmune reaction to the vaccine are slowly improving to the point that I'm now able to return to work. Anti-inflammatory treatment might have been worthwhile for me at the peak of my symptoms, but I couldn't get an appointment with a neurologist, and when I did, he couldn't recognize my underlying problem due to the newness of the vaccines.

Hello, I'm not sure if this is allowable or not, but I wanted to share my experience and see if anyone else has experienced this because I am at a loss and can find no answers/help anywhere.
I am a 55 year old female who has a history of fibromyalgia for 15+ years but was not taking any medication for it. I was living an active life other than the normal pain from fibromyalgia that I had gotten used to and accepted. I was required to get the covid 19 vaccine (Pfizer) in January 2021 in order to keep my job because I work for a nursing home company (even though I work from home). 5 days after the first dose of the vaccine I started having a vibration (feeling of cell phone vibrating) in my right hip. I thought it was a pinched nerve and after about a week or so when it didn't go away, I went to see a chiropractor. While being treated by the chiropractor, it came time for my second dose of the vaccine. Not thinking my issue was related to the vaccine, I received the second dose of the vaccine (again in order to keep my job). After the 2nd dose of the vaccine, I started getting numbness and tingling in my feet that did not go away and my entire body also vibrated every time I looked down.
Over the past year the numbness, tingling, vibration has spread to my entire body (I even feel it in my face and head now). It is constant and does not go away. My balance is very bad where I walk with a walker or cane when going out and I feel cold on the inside down to the bone. I also am now having stomach issues for the past few months. I have had 9 MRI's, a lumbar puncture, a nerve conduction study done on all four extremities and all of the normal lab workups. The lumbar puncture showed increased protein in my central nervous system, but everything else is not showing anything that would cause my symptoms. I have been to 2 different MS clinics and to 6 different neurologists and have yet to get a diagnosis or a treatment that works.
I work on a computer for a living and was off work due to my hands and fingers being numb and tingling constantly that made it very difficult work. When my FMLA ran out and even though my doctor stated that I was not able to work, my employer (who required me to get the vaccine to keep my job) on 11/1/21 denied my personal leave and stated I would be terminated on 11/5/21 if I did not return to work full time by then. I did not want to lose my job and honestly couldn't afford to lose my job, so I asked the doctor to let me try to return to work. I am currently working but having extreme difficulty and not sure that I'm going to be able to continue much longer. My doctors are doing a skin biopsy on 1/31/21 but have said if this does not show anything they do not know what else to do. Based on my reflexes they state they know something is going on, but they don't know what it is or how to treat it. I am desperate and am putting all of this out here to see if there is anyone else dealing with this and if so, what they were diagnosed with and how and if their treatment worked.
Any help anyone can offer would be greatly appreciated. I have not been able to get any medical or legal help from anyone with this and I don't know where to turn.
Thank you.