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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’m in the severe pain group. I would be willing to get off statins if it would be palliative, reducing pain. Trouble is worrying about the consequences. Obviously, I sure don’t need a heart attack! So, I’m really interested in research and/or clinical trials on this; but reports here indicate not much to review.
Hmm, I did not know about alternatives AFTER using statins. Yes, it is LDL. Thanks for posting. Conventional wisdom, maybe hearsay was that once you started statins you had to continue them or increase an event risk. Recall President Bill Clinton doing just that, then making a public admonishment NOT to stop statins.🤷♂️
Repatha is quite effective in reducing troublesome fats. Some insurance companies cover, some don’t. They have a help line where they reduce costs to as low as 5:00.
God help us all. I feel like I'm living in a 3rd world country regarding my entire dealings with the medical field etc.
I'm so fed and very mad that SO MANY doctors brush off so many patients complaints and their symptoms or have to be pushed into doing tests that can rule in or rule out a disease etc.
I'm just furious at this point. I will be traveling to a city about two hours North of my home in SW Fl to a Long Haulers clinic. I've about given up on Mayo in Jacksonville due to Mayo only have ONE neurologist that deals with Autonomic Nervous System issues and the many negative patient reviews mostly all saying the same thing about this one neurologist AND to top of off the seven hour drive. Gas and hotel costs etc I'm about to wash my hands with all this. Sucks. Tired of complacent or passive doctors and those who will NOT listen etc
I think Bill was wrong. At least I've never heard that from two cardiologists I've seen, one beingbthe creator of the Calcium Score and who I wish I'd not moved too far away too keep seeing easily. A really good doctor and reassuring, positive but realistic, person.
P S One thing that a lot of people take is no-flush niacin. But a friend was on that and was in a car accident and doctors in the ER insisted that he must have been on blood-thinners as they had a lot of trouble stopping the bleeding. It was the ER nurse who asked about everything he was taking and told the doctors her husband had had a 'paradoxical' bleed after a small wound when on no-flush niacin. So just a heads up on the natural stuff that's been under-studied.
It's hard finding the best people in any field but sometimes seems harder in medicine because insurance might preclude affordable choice and network stuff and annoying things like that. But there are great doctors still practicing who listen and pat attention. I recently switched to a larger medical system and got a new, experienced, thoughtful PCP with 30 years in practice. We discussed something and, to my surprise, he messaged me through the medical portal, of something additional that occurred to him later that. I've sent 3 firemds to him who are equally impressed with his attentative-ness. I'm confident that you're persistent enough, though justifiably tired of the effort it takes, to find a doctor who works for you.
If you have a cardiologist you have confidence in, would an echocardiogram and calcium shore suggest that you might not need statins anyway. There's a ton of research about statins, and even the benefits of some cholesterol, and a lot of doctors rethinking the former knee-jerk over prescription of them. But a good cardiologist, aware of thr current research and controversy, might work with you about discontinuing them if appropriate. Or radically reducing the dose?
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1 ReactionA member shared this article with me and thought it might be of interest to others. It does shed some light on a lot of the different problems.
April 11, 2022
The Global Burden of Polyneuropathy—In Need of an Accurate Assessment: https://jamanetwork.com/journals/jamaneurology/fullarticle/2790733?guestAccessKey=34cb3926-9a1a-415b-bb3b-36590fff38c1
Hi..wrong about what?
Once you get (if you do) the SFN diagnosis that is only the start. Now you have to find what is causing it. Be relentless! In order to treat SFN you need to find the cause or you will only be treating the symptoms as you are now. I am on your same path and found a doctor to work with me. I see progress but it is not overnight. This is almost 3 years for me.