COVID vaccines and neuropathy

Posted by cue @cue, Feb 15, 2021

I am 85 with small fiber neuropathy that is getting worse. My neurologist thought it would be a good idea for me to wait with the covid vaccine and not be first in line to see how it affected other people with neuropathy. Probably because it is a new technology. Has anyone had a problem with neuropathy after receiving the vaccine? If so, which vaccine?

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@kimegraves

Have you seen your primary care MD?

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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.

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@txsongbird

Neuropathy is covered as a SS disability, so what is the problem?

Have you hired a SS disability attorney?

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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.

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@dhamil

That is great! Did you do anything besides gabapentin that may have helped with your neuropathy? I stopped taking gabapentin because of the side effects and found that it wasn’t helping with my neuropathy anyway. My neuropathy has never went away since my first and only Pfizer vaccine 4/21. It does get better here and there but always comes back just as bad and sometimes worse.

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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.

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@cue

I have never had any issues with neuropathy until I was vaccinated! (Phizer) After 2 months of being fully vaccinated my life was completely turned upside down!

My neurologist just diagnosed with “Post Vaccination Paralysis” instead of Small Fiber Neuropathy, due to my blood work and biopsy being normal. I have severe neuropathy now in my face, hands, arms, and legs. Most days I cry and haven’t been able to work for a year now.

Best of wishes, hope this helped!

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@shara

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.

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@shara

I have seen 3 neurologists, 2 rheumatologist, and a few other specialists in my state over the past year. I literally thought I was dying or had a auto immune disease.

After tons of blood work, tests, and many Dr appointments all “underlying conditions” have been ruled out. Not one of the Drs I saw know how to help me, only said this is from the vaccination and see you in 4 months! I’m grateful that I was able to rule out many auto immune diseases and know for sure my symptoms are certainly vaccinated related! However, I have not been able to work for a year, selling my home, and moving to California with my little sister due to my many issues after being vaccinated.

I was just diagnosed with “Post Vaccination Paralysis” and “Fibromyalgia onset from the vaccination”. My rheumatologist told me he didn’t know what to diagnose me with since there isn’t really a diagnosis yet. He Literally told me “this is a shit show” I personally have exhausted every specialist and test, and now going to focus on finding homeopathic remedies and supplements to help live a normal life until the government/FDA/CDC open their eyes and help Drs find a solution for us!

I’ve been doing some research and found a site very helpful: https://react19.org/

Hang in there and hopefully we get help soon! There are Drs out there working on finding answers for us, speaking up for the ones vaccinated injured, instead of hiding the truth!

REAL, NOT RARE!

Best of wishes, hope this helped!

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@heatherupchurch

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.

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@heatherupchurch

I never had any symptoms of carpal tunnel and 2 months after being fully vaccinated I woke one morning with severe carpal tunnel in both hands! I went to ER and they diagnosed me with carpal tunnel, saw specialist next day and he confirmed carpal tunnel by tapping my wrist and since my hand flung back, he was sure it was carpal tunnel. Mind you, I’ve never had any symptoms prior. He offered steroids or surgery, luckily I opted for steroids. A week later the real crazy stuff started! Neuropathy to the point I couldn’t walk, severe nerve pain, muscle spasms, etc… I googled carpal tunnel and nothing mentioned the numbness in legs, so I called the carpal tunnel specialist and told him what was happening and he then said “oh this isn’t carpal tunnel” I was dumbfounded and sent to a spine specialist next. Had a MRI and everything was normal, nothing explained the numbness and weakness in my legs. I was then referred to a nerve specialist who ruled out carpal tunnel. What??? I don’t have it at all?? Why did my hands swell so badly overnight??? Terrified and confused about what was happening!

The three specialists got together and reviewed my case, they told me they thought I was having a reaction to the vaccination. They csaid get to SLC now! We don’t know what to do for you.

I Immediately went to ER two hours away and was then told “this can’t be from the vaccination”, completely dismissed and left list 😞. The ER did refer me to a neurologist since I had severe neuropathy. Waited months to get in to see him. Terrified and depressed and scared and lost! All alone and unsure of what was happening! I was finally able to see the neurologist and I was testing for MS. I finally got brain scan and MS was ruled out! Oh happy day, but what is happening? Referred to a muscular neurologist who also couldn’t find any reasons for my sudden onset symptoms!

I have been sick for over a year now, and seen many neurologist and rheumatologist. Selling my home after depleting my fathers bank account, moving to California with my little sister for help. I’ve always owned my own home since 19 and to be so helpless and vulnerable, depending on others for most everything has been so completely debilitating and depressing!

In the end, I have been diagnosed with “Post Vaccination Paralysis” and “Fibromyalgia Onset by the vaccination” I too have been denied for SS and now have a lawyer.

I completely understand the frustration and many other scary stuff happening to you!!

I hope my story has helped you and please visit this website: https://react19.org/
I have found help, resources, and just knowing I’m not alone!

Wishing you and all of us the best and hopefully we get some help soon!

REAL NOT RARE!

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@mangamaker

I want to get vaccinated but can't find out if Pfizer or Moderna are Flouroquinolones. I've been floxed and don't want to go down that path again. Johnson & Johnson is a flouroquinolone. Google has removed the info about Moderna and Pfizver. I also want to know more about the remidesiver or however it is spelled. I'm writing to you to ask how it went when you got the vaccine with your issues. I hope you are fine. Did it work out? Any side effects?

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I was floxed 2009. Got the Pfizer first jab, against my daughter's wishes. I did talk to the drs before the stick about the FQ.Mushroom of pain at 12 minute mark. Within a couple weeks my back was on fire, the kind of fire pain I had when floxxed. But on my back, bra line not arms legs like 2008/9. So I will not have another covid vaccine.
I did test positive for covid about a year later but exceptasymptomatic,. burning pain in left arm was not typical, asymtomatic. My daughter believes my DNA, mitochondrial damage. Pfizer n Moderna are RNA messengers, this was her reason for not wanting me to get the covid vaccine. She got hers and is for the science, just not in my case.

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Immediately following the new Pfizer Booster for COVID 19 (in October, 2022), I started experiencing tingling and an odd sensation in both feet. My previous three Pfizer vaccines produced absolutely no adverse reactions. What I now understand to be small fiber peripheral neuropathy is slightly more pronounced six weeks post booster. I'm wondering if anyone else has had this type of reaction to the new Booster.

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After my second dose I had no tremors for 2 days,so I knew it had a neurological effect. I also wet the bed after each shot,which was strange. The main difference I noticed was the fasciculations that started in my calves after my second dose. My friend who has a progressive neuromuscular disease was told by his neurologist to not get the boosters. So until they determine the actual cause of my condition I'm not getting any vaccines.

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I recently, fully recovered from what was diagnosed as vaccine-induced neuropathy. I’m truly grateful to have come through it without permanent damage. I received Evusheld (monoclonal antibodies) in September and was due to receive a second dose in March. Evusheld is generally used for immunocompromised patients, but my situation qualified. I just received notice from the Cleveland Clinic last week that they are discontinuing Evusheld because it is ineffective against the current variants. That was my safe protection option, as I’m sure it was for many patients. Does anyone know whether there are any new monoclonal antibody treatments that do address the new variants? Anything in the pipeline? I would hate to think that there is nothing to replace the safe option for the large group of vulnerable, immunocompromised people. I’m not immunocompromised, but fortunately, I had Evusheld as an option. I have not been able to find anything encouraging in my research for new developments. Surely, someone must be working on an updated treatment. That’s the case with the vaccines. Has anyone heard of anything to replace the original Evusheld? My situation aside, the immunocompromised population should not be ignored. They are some of the most vulnerable of us.

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