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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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First, if your neurologist knows little about SFN, find one that does. If you have idiopathic SFN, and nothing has helped, go,to a pain specialist to see about Dorsal Root Ganglion stimulation. Do extensive research before you go. I start my 5 day trial for DRG stimulation on 4/11/22. There is little to no hope for patients with idiopathic small fiber neuropathy. Spinal,cord stimulation may be your answer. Don’t depend on the medical industry to come out with some miracle pill or treatment. They do research with absolutely nothing to show for it except more clinical trials that lead nowhere in terms or treatment.
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3 ReactionsI am interested in who you saw at Mayo. I am headed there in June, but have not been told who I will see.
Dr. James Dyck. Not his father, who is also James Dyck MD
I hope you are staying at the Kahler Grand Hotel, 855-516-1090. It’s literally right across the street from the front door of the Mayo Clinic. It also has a tunnel to get across to the clinic during bad weather.
Yes, like the Kahler. We are staying at the Residence Inn by Marriott. I spent over a month there when I had my SCT and they were wonderful. We like having a kitchenette.
Was he personable?
Somewhat dry but he knows his stuff. Plan on 4 to 5 days there
Just received my info. in my portal. I am seeing Dr. Nathan Staff. I am scheduled for my EMG before I see him. I am, also, seeing my oncologist that day. I fly out the next morning unless they make me change it. I have my results for SFN from Washington which were positive. EMG was negative. Also, I have all the blood test that they sent there, too. Hope that will speed things up. It is an amazing place. I would not be here if they had not diagnosed my blood disorder 8 years ago.
I intend to ask my cardiologist if there might be an alternative to statins on the assumption that they might be largely responsible for this blinking neuropathy. Maybe there’s an analog drug with a different chemical structure? Of course there are likely risks to consider - maybe unknown. Any thoughts?
I don’t know what you are trying to lower, my guess is LDL. There are numerous non-statin drugs out there. Your Internal Medicine doctor will know. In re statins causing neuropathy, that would take a great deal of research, but I am sure your Mayo neurologist can answer that as well.
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