Anyone had a problem with neuropathy after receiving the vaccine?

I’m so glad that you feel that you’re benefiting from the information that I’ve shared. Thank you so much for letting me know that. Take care.

Hi, I had Covid in August - took Plaxovid (5 days). On the 6th day the left side of my face became numb starting with my earlobe. The numbness has spread up and down the left side of my body. My B12 was 203 so I'm taking supplements.
None of my doctors offered steroids as a way to stem the progression. I have Pulmonary Sarcoid and MAC as well. Nerve conduction test is next week.

I’m sorry to hear about your symptoms. In my case, the diagnosis was peripheral neuropathy, which presented in both sides of my body. The plan to use a short term course of steroids would start as early as possible with the onset of symptoms. I hope that you will find resolution to your situation. Best of luck.

This is the first time I’ve posted and have read comments from many with PN. I’ve been diagnosed with idiopathic peripheral neuropathy. The diagnosis was based on results of EMG. I’ve had epidural steroid injections twice to no avail. It started with tingling of feet and has moved to lower legs effecting muscles. I am in pain most of the time and find that I can no longer exercise or take long walks as before. I tried Gabapentin but did not like the side effects so use Aleve sparingly. I have always been quite active and am trying to determine the cause of the neuropathy. My primary care doctor is of the opinion (after review of a complete blood panel and urinalysis and his own testing) that the cause of my leg problems may not be neuropathy connected. He is sending me to see an orthopedic. I have a future appointment with a neurologist also. As for Covid, I had it early in 2021 and had Mono-Clonal antibody treatment. The neurology surfaced in early 2022 and has been present throughout 2022 during which time my condition has worsened. Has anyone been to the Mayo Clinic in Rochester? I am in NC but was a patient at Mayo Clinic in Jacksonville for several years. If no resolution to the cause and/or treatment is determined, I am wondering which Mayo Clinic location would be a better choice. I have read that the Mayo in Rochester specializes in Neurology, although the Jacksonville location would be closer. Any ideas on treatment options that alleviate symptoms would be helpful.

Hello @betl, Welcome to Connect. I also have been diagnosed with idiopathic small fiber peripheral neuropathy but I don't have any associated pain, just some numbness and a little tingling. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/

I was diagnosed by a neurologist at Mayo Clinic Rochester after having the condition for 20+ years not having a diagnosis, just numbness symptoms. I don't think it makes much difference as far as treatments go. They can only treat the symptoms as there really is no cure for neuropathy. There is a good list of available treatments on the Foundation for Peripheral Neuropathy website here that might be helpful - https://www.foundationforpn.org/treatments/

Has your primary care doctor shared what they think could be causing the symptoms if it's not neuropathy?

John,
Thank you for your reply. You are fortunate that you’ve not had pain with the neuropathy. Mine started with tingling of the toes but soon graduated to leg and muscle pain. Leg pain was the reason the EMG testing was done. The final diagnosis was ideopathic peripheral neuropathy. I’ve had a complete physical hoping to locate the cause. My primary care doctor’s belief is that the neuropathy and leg/muscle problem are two different issues, although I realize that neuropathy can also affect the legs, as well as hands, etc. The doctor does not know more which is why I have now been referred to two different specialists. Thanks again for your response.
Betty

Sent from my iPhone

PS: Thanks for the referral to the Foundation. The info is very helpful.

Sent from my iPhone

Originally I saw primary who sent me to a neurologist which took 5 months to get in. Neurologist said idiopathic pn , start on gabapentin, bye! 2 neurologists in my area have retired and I would love to find one near Portland or. If anyone has one they feel positive about.

So is ptsd, carpal tunnel, fibromyalgia, depression, anxiety, and other things I have, if disabling, and they were even before this new autoimmune and neurological stuff. My disability determination caseworker told me he doesn't believe in anything that can't be definitively diagnosed, especially things like fibromyalgia that are only diagnosed by ruling other things out.

So I guess he's waiting for a definitive diagnosis of something. Guess he doesn't believe in ptsd or anything either, idk.

I just subjected myself to a horrible, barbaric nerve conduction test and emg for that very reason. Hopefully I will get some kind of "real" diagnosis from that that will appease him. The results were ready that same day, but I have to wait til Tuesday and pay yet another copay to get them. I've known for years I have severe carpal tunnel and so have my drs but I've never had that horrible test. I'm pretty positive I have polyneuropathy as well. If it's not that I probably have MS which means more and different tests.

I'm just so infuriated. I am so bad off I could probably be in a nursing home and every dr has witnessed it. There's no excuse for all of this torture and waiting. Especially when the vaccine caused all of this new stuff and I have supporting evidence of that. The least thing the government could do after encouraging and coercing people with false information to get it is fast track their disability. They are the ones who made it so no one has to be responsible so they should accept some responsibility or at least do the minimum amount possible and approve my case instead of causing me more suffering and trauma with all of the waiting while I am barely surviving and about to be homeless because of it. Completely ridiculous.

No, I don't have an atty yet. I tried but they said I have to wait until I'm denied.

Me too. Strangely, naltrexone for mystery itching calmed down the numbness and confusion for me a lot. I discovered it has an anti inflammatory action both on cytokines and the microglia in the brain. I had to stop taking it unfortunately bc it made my anxiety way worse.