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Idiopathic Small Fiber Neuropathy Research
This coming June, I will make a journey to the Mayo Clinic in Rochester, Minnesota seeking answers to my diagnosis of idiopathic small fiber neuropathy. This will be my last major effort in getting some kind of relief. I was diagnosed about 5 years ago (skin biopsy) and have tried gaba, Lyrica and Cymbalta. I am currently taking 300 mg of gaba ( got as high as 2,400 but it’s useless) and 60mg of Cymbalta. I retired from the pharmaceutical industry after 40 years, and was 62 when diagnosed. My major complaint is burning feet, especially the bottom of my feet. I exercise routinely.
From my research it appears that there is not a lot of research on the etiology of neuropathy, but more on palliative treatment, and not much of that. Mayo is considered the #1 neurology hospital in the country. Does anyone have any first hand information as to what research is taking place there, if any?
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I am glad the site is back on. I have Neuropathy in my feet & legs & the Gabapentin & Cymbalta doesn't help much.
Any suggestions are helpful & I learn a lot from other people.
God Bless
Genie
@tigreyes2004 - Have you tried any alternative or natural treatments for your neuropathy to see if they might offer some help?
- Complementary + Integrative Therapies: https://www.foundationforpn.org/living-well/integrative-therapies/
- How to treat peripheral neuropathy naturally: https://www.medicalnewstoday.com/articles/326779
Hi John
I am so glad we\re back on line.
No I haven't tried anything else.
I tried caniibas but I don't like that bc of my COPD.
I am going for my J & J vaccine on Sunday. I am scared but I am going to do it.
I will look into some natural treatments.
Thanks
Genie
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1 ReactionHoping your vaccination goes smoothly!
Thank you John.
What should I do if I get a reaction? I am going by myself & have to drive home & my husband is working & is going on his lunch break .I'm just scared of passing out while driving bc I have very bad anxiety & I have passed out before when I get scared.
I can understand why you would want someone to drive you to your appointment. I would feel the same way if I had anxiety and have passed out before when afraid. Have you checked with your local state, county or social services to see if there are any volunteer driver programs to take you to your appointment or do you have any friends that can drive you?
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1 ReactionThank you John. I have friends all over the world but unfortunately none where I live. They have all moved or died sadly to say. I guess I will be ok but very concerning. Than you for your help. Jesus will be with me. I am going to do what I have to do.
God bless
Genie
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2 ReactionsI find a 0.25 dose of Xanax before going to bed usually gets rid of the anxiety from a bad day of numbness & walking difficulty resulting in a much better next day.
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1 ReactionIf you seen my story magnum52 I’ve found nothing that helps I’ve tried a bot of everything. I’m new here my whole body is tingling as we speak and my lips our numb feet burning crawling all the up to my both my knees . I can’t feel my feet a drag them
I take temezepam at bedtime with my 300 mg of Gabapentin & I sleep well except I get up to go to the bathroom a lot.