Axonal peripheral neuropathy: Finally, a diagnosis!

Posted by Ray Kemble @ray666, Aug 6, 2022

Hello!

I know I've been here before, but probably not for many months For the past few years, I have seen specialist after specialist hoping to finally receive a diagnosis. Only last Monday I was told by the most recent of several neurologists that I have axonal (loss) peripheral neuropathy. Now that I have a name to attach to my problem, I would love to talk with others who have received similar diagnoses. I have such basic questions: What to do now? What should I expect? Where do I go from here?

Ray (@ray666)
Denver

Interested in more discussions like this? Go to the Neuropathy Support Group.

Here is another article from a “Medical Journal” !
The title is, “ Barriers and facilitators to the implementation of virtual reality interventions for people with chronic pain: a scoping review”.

https://preprints.jmir.org/preprint/53129?__hstc=102212634.93272acc371cac84afa2cfeb74f13744.1696694745535.1696694745535.1696694745535.1&__hssc=102212634.1.1696694745535&__hsfp=1547706626
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@artemis1886

My cardiologist and neurologist gave me the articles to read on the Moderna shot and neuropathy. Google it. This website does not allow attachments from the journal of medicine.

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Multiple case series have demonstrated the emergence of small fiber neuropathy following acute coronavirus disease 2019 (COVID-19) infections. Further, one large case supports that the COVID-19 vaccine has been reported to result in small fiber neuropathy. We report a case of a patient with confirmed small fiber neuropathy post-COVID-19 vaccination with positive FGFR3 antibodies. Although the COVID-19 vaccination has helped protect many against the COVID-19 virus, the vaccine has been associated with some complications. There are published patient cases of COVID-19 infection and Pfizer and Moderna vaccine administration causing neurological conditions including Guillain-Barre syndrome, transverse myelitis, and small fiber neuropathy [1–8]. The mechanism underlying the development of small fiber neuropathy after COVID-19 vaccination is not known. Therefore, effective treatment remains unclear. It is suspected that small fiber neuropathy occurring after administration of the COVID-19 vaccine could be an immune-mediated process [4

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@artemis1886

Multiple case series have demonstrated the emergence of small fiber neuropathy following acute coronavirus disease 2019 (COVID-19) infections. Further, one large case supports that the COVID-19 vaccine has been reported to result in small fiber neuropathy. We report a case of a patient with confirmed small fiber neuropathy post-COVID-19 vaccination with positive FGFR3 antibodies. Although the COVID-19 vaccination has helped protect many against the COVID-19 virus, the vaccine has been associated with some complications. There are published patient cases of COVID-19 infection and Pfizer and Moderna vaccine administration causing neurological conditions including Guillain-Barre syndrome, transverse myelitis, and small fiber neuropathy [1–8]. The mechanism underlying the development of small fiber neuropathy after COVID-19 vaccination is not known. Therefore, effective treatment remains unclear. It is suspected that small fiber neuropathy occurring after administration of the COVID-19 vaccine could be an immune-mediated process [4

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There is strong epidemiological data suggesting that COVID vaccination can cause neuropathies such as Guillain-Barre syndrome [6]. Small fiber neuropathy, unlike Guillain-Barre syndrome and chronic inflammatory polyneuropathy, is not an established post-inflammatory or autoimmune condition [12] nor is it an FDA-approved condition for IVIG. This is particularly relevant since many patients have suffered with idiopathic small fiber neuropathies and can only be treated palliatively with non-narcotic nerve pain medication.

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@artemis1886

There is strong epidemiological data suggesting that COVID vaccination can cause neuropathies such as Guillain-Barre syndrome [6]. Small fiber neuropathy, unlike Guillain-Barre syndrome and chronic inflammatory polyneuropathy, is not an established post-inflammatory or autoimmune condition [12] nor is it an FDA-approved condition for IVIG. This is particularly relevant since many patients have suffered with idiopathic small fiber neuropathies and can only be treated palliatively with non-narcotic nerve pain medication.

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Who is the authority tied above? Where are the citations and the numbers? It’s incomplete without those. In one sentence they mention one case. That’s not enough to generalize.

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@cantab

So what was their conclusion?

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Peripheral neuropathy has a link to the COVID vaccine. This stems from rare reports of people experiencing neuropathy symptoms after receiving one of the vaccines. However, there is no evidence of a causal relationship.

The COVID-19 vaccine is an important tool that reduces illness and death from SARS-CoV-2, the virus responsible for the infection. While it offers valuable benefits, it can cause side effects, including
burning. In some cases, the neuropathic symptoms can be serious.

Certain neuropathic conditions, such as Guillain-Barré syndrome (GBS), have some associations with the vaccine. However, these tend to be rareTrusted Source.

This article discusses the connection between peripheral neuropathy and the COVID-19 vaccine, including the symptoms, possible causes, and treatment. It also discusses the vaccine’s safety and when to seek emergency treatment.

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@artemis1886

Peripheral neuropathy has a link to the COVID vaccine. This stems from rare reports of people experiencing neuropathy symptoms after receiving one of the vaccines. However, there is no evidence of a causal relationship.

The COVID-19 vaccine is an important tool that reduces illness and death from SARS-CoV-2, the virus responsible for the infection. While it offers valuable benefits, it can cause side effects, including
burning. In some cases, the neuropathic symptoms can be serious.

Certain neuropathic conditions, such as Guillain-Barré syndrome (GBS), have some associations with the vaccine. However, these tend to be rareTrusted Source.

This article discusses the connection between peripheral neuropathy and the COVID-19 vaccine, including the symptoms, possible causes, and treatment. It also discusses the vaccine’s safety and when to seek emergency treatment.

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@artemis1886 It would be helpful if you could post links to the articles or at a minimum the exact title of the article and where you found it (NIH, NHS, PubMed, etc.) so others can find it also.

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@cantab

Who is the authority tied above? Where are the citations and the numbers? It’s incomplete without those. In one sentence they mention one case. That’s not enough to generalize.

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I can’t attach the website. I contacted system administrator.
Google - Covid shots and Neuropathy
Medical News Today and the other article National Institute of Health.gov
New people can’t attach articles due to possible spam is the error reading I am getting. I went through RN school. There are a lot more articles about Covid shots and neuropathy just google
The one my neurologist gave me came from the jouranal of neurology the cardiologist gave me one from the journal of cardiology. After my second shot I immediately started having problems with bradycardia and tachycardia did a one month holter monitor test on me. He said it is a very well documented side effect. Now I see an electrophysiologist not eligible for pacemaker because the nerve conduction in my heart screwed up my the small fiber neuropathy. I am really surprised none of you have looked it up.

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@johnbishop

@artemis1886 It would be helpful if you could post links to the articles or at a minimum the exact title of the article and where you found it (NIH, NHS, PubMed, etc.) so others can find it also.

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I have contacted the system administrator about it. I am getting a spam error. Google Covid shots and Neuropathy
I am surprised no one has done it.
One article from National Institutes of health. Gov second article from Medical News Today.
Since I am in the medical field there are also articles in the journal of neurology and the journal of cardiology. You have to be licensed to access those articles. Ask your neurologist for a copy of them. I do not know if you will understand everything they are saying.

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@artemis1886

I can’t attach the website. I contacted system administrator.
Google - Covid shots and Neuropathy
Medical News Today and the other article National Institute of Health.gov
New people can’t attach articles due to possible spam is the error reading I am getting. I went through RN school. There are a lot more articles about Covid shots and neuropathy just google
The one my neurologist gave me came from the jouranal of neurology the cardiologist gave me one from the journal of cardiology. After my second shot I immediately started having problems with bradycardia and tachycardia did a one month holter monitor test on me. He said it is a very well documented side effect. Now I see an electrophysiologist not eligible for pacemaker because the nerve conduction in my heart screwed up my the small fiber neuropathy. I am really surprised none of you have looked it up.

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You should be able to post links after a short period of time. New members are not allowed post links when they first join to prevent spammers from posting in our discussions. Covid shots and Neuropathy is not really good enough to find reliable information. There is a lot of info out there but it's difficult to evaluate in my humble opinion due to the way the data is collected and no real clinical studies being involved that I have found. Here is probably one of the articles that I think you might have been referring to:

"It is suspected that small fiber neuropathy occurring after administration of the COVID-19 vaccine could be an immune-mediated process [4]. There is evidence that TS-HDS and/or FGFR3 antibodies are present in patients with small fiber neuropathy related autonomic dysfunction and burning parasthesias [9]."
--- Small Fiber Neuropathy Triggered by COVID-19 Vaccination:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9891845/

If you read through the article, this is talking about one individual but mentions other cases. I do think it shows a connection but it doesn't really mean "X" percentage of folks who get COVID vaccines are going to get neuropathy (in my non medical opinion). I think one might be able to make a better case if they dug through all of the VAERS database reports and came up with better statistics to show how many people got the vaccine vs how many people had adverse affects.

I would be happy to post any links for you if you tag my member name and provide the exact title to the article so that I can find it.

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