Connect
← Return to Small Fiber Neuropathy: What helps?
Discussion
Small Fiber Neuropathy: What helps?
Neuropathy | Last Active: May 17 2:03pm | Replies (284)Comment receiving replies
Diagnosed with SFN after a Sweat Test at Mayo in January 2017; took gabapentin even though it did nothing for the numbness in feet and calves but did help with sleep. July 2017 drove cross-county from Massachusetts to Missouri, but by December 2017 I had to stop driving completely as I had no feeling in my feet. Also during the 6-month period, numbness, pain, tingling, etc., spread up both legs and up to my waist. Now using a cane and waiting to have electronic hand controls installed on my car. Having a great deal of body awareness, I've been saying that there's something going on in my very, very arthritic, scoliotic spine. Wasted those 6 months waiting for an appointment with a neurologist at Wash U Medical School, thinking it was easier to get a friend to drive me to St. Louis than to Rochester. But that appointment turned out to be a total waste of time and money. Now working towards getting back up to Mayo (when I can drive there!) to see neurologist and spine specialists and see about a nerve biopsy and possible spinal conditions that could cause my symptoms.
Replies to "Diagnosed with SFN after a Sweat Test at Mayo in January 2017; took gabapentin even though..."
I still hold out hope for treatments that "repair" damaged nerves instead of just treating the symptoms. Drugs that are now being used do nothing to help with the nerves themselves, all they do is "trick" the brain into blocking the pain signals (my non medical training or background words). Before I saw my neurologist, my doctor put me on gabapentin and it did nothing for me. Then I found out it doesn't do anything for numbness so I stopped taking it.
The only real caution is that there are a lot of companies out there making money off of folks with PN who are in extreme pain. What they offer may or may not help so you have to be your own advocate and do your own research.
John
@steeldove, the Kempf electronic hand controls for your car sounds like it will be a big help for you. If possible can you share how it works for you?
Good luck!
John
Definitely will share info about the Kempf electronic hand controls. Locally I tried mechanical hand controls, but the ones the local evaluator was pushing on me were controlled with my left hand--twist for gas, push for brake--with a steering knob required on the steering wheel. A retired MD with multiple sclerosis let me try his vehicle which is equipped with Kempf controls--a ring inside the steering wheel for gas, a lever near the steering wheel for brake--and it felt totally intuitive. At the push of a button, the electronic controls can be turned off and the vehicle can be driven by anyone in the usual way. Google Kempf hand controls and explore the website. Costs much, mulch more than mechanical controls, but I'm buying my independence (thanks to my wonderful daughter!).
I was diagnosed 13 yrs ago and I have to be on prednisone the rest of my life along with gabapention. And pain meds. How do you deal with the pain???
Connect
Clinical trials for what? Neurologist at St. Louis said that it's small fibre and large bundles, and I've no, really NO feeling in my feet. Knew I had to stop driving when in order to drive I had my left hand on the steering wheel and my right hand on the emergency brake. I'm definitely NOT giving up driving, so I'm having Kempf electronic hand controls installed on my tiny Prius c.