NeuroTalk Support Groups - New member with Progressive Inflammatory Small-fiber Neuropathy soon to start IVIG

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New member with Progressive Inflammatory Small-fiber Neuropathy soon to start IVIG

Hello, This is my first posting.
I have had very painful small-fiber neuropathy since 2013. It started with mild tingling in extremities and progressed quickly to pain of all types. I have also lost some sensations in different areas of my body.
The pain has now spread to nearly my entire body. My autoimmune conditions were extremely flaired-up after contracting Covid in early 2020 resulting in the need for weeks of steroids. I am now on hydroxychloroquine for the inflammation.
Mindfulness Based Stress Reduction (MBSR) has helped me deal with the symptoms. Low-dose Naltrexone, Medical Cannabis, R-Lipoic Acid and Acetyl-L-Carnitine give some limited relief of pain.
We have traveled extensively for medical consults and I finally had a skin biopsy last year that was positive for small-fiber sensory and autonomic axonopathy, and another for Sjogren’s. I have multiple autoimmune conditions, previous surgeries, etc. My neurologist believes my disease is likely ganglionopathy caused by Sjogren’s.
After much delay due to insurance reasons I am soon to start IVIG home-infusions.
I would most like to connect with anyone who has similar diagnoses and treatment with IVIG.
May we all be well, Hope

Welcome Hope Leslie. :Wave-Hello:

Hope, I would like to reply but for own Neuropathy issues Grape Seed Extract and INOSINE have been winners for me. I don't have autoimmune issues.

Welcome to the community Hope Leslie.

**

A web search, or search on NT can find info on meds, supplements and vitamins..
Cross check and verify info and the sources that you find it on..
Also check for any interactions with things you are taking before adding anything new.

** I've been taking Grape Seed Ex for over 25 yrs that is not enough use/proof? Inosine has gotten rid of the burn/tingle issues I've been left with from hip surgery. This is enough proof for me. I have so many benefits from Grape Seed Ex and I've talked about most here for some time. Do you think I would take these 2 as long as I have if I didn't feel confident?

Bumping up the original member's post.

Quote:

Originally Posted by Hope Leslie (Post 1294902)

Hello, This is my first posting.
I have had very painful small-fiber neuropathy since 2013. It started with mild tingling in extremities and progressed quickly to pain of all types. I have also lost some sensations in different areas of my body.
The pain has now spread to nearly my entire body. My autoimmune conditions were extremely flaired-up after contracting Covid in early 2020 resulting in the need for weeks of steroids. I am now on hydroxychloroquine for the inflammation.
Mindfulness Based Stress Reduction (MBSR) has helped me deal with the symptoms. Low-dose Naltrexone, Medical Cannabis, R-Lipoic Acid and Acetyl-L-Carnitine give some limited relief of pain.
We have traveled extensively for medical consults and I finally had a skin biopsy last year that was positive for small-fiber sensory and autonomic axonopathy, and another for Sjogren’s. I have multiple autoimmune conditions, previous surgeries, etc. My neurologist believes my disease is likely ganglionopathy caused by Sjogren’s.
After much delay due to insurance reasons I am soon to start IVIG home-infusions.
I would most like to connect with anyone who has similar diagnoses and treatment with IVIG.
May we all be well, Hope

You can try our search tool to find more posts on IVIG, I know there has been many past posts mentioning it..

Quote:

Originally Posted by caroline2 (Post 1294918)

Hope, I would like to reply but for own Neuropathy issues Grape Seed Extract and INOSINE have been winners for me. I don't have autoimmune issues.

Thank you, I will look into the inosine.