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Small Fiber Neuropathy: What helps?
Neuropathy | Last Active: May 17 2:03pm | Replies (284)Comment receiving replies
I was diagnosed with idiopathic SFN 3 years ago, and since then I have realized I've had symptoms since as early as 12 years old. I've been able to manage things pretty well until recently. About 2 months ago it seems my symptoms have gotten worse, and I now can not tell how much pressure I'm putting on a gas or break petal. I explained this to my neurologist at MUSC and was given a blanket statement and told to see a phycologist because its not SFN. I then questioned the Dr. why they would tell me three years ago that what I was describing was a symptom but now its not, and I was brushed off and told not to drive until something can be figured out. They offered an in person appointment in January but I'm not sure if I should continue with that Dr. Has anyone experienced numbness to the point of not being able to drive? Also does anyone have any suggestions for Neurologist's in S.C.? Thanks in advance
Replies to "I was diagnosed with idiopathic SFN 3 years ago, and since then I have realized I've..."
Hello @jinxedroot93, Welcome to Connect. I have numbness from my idiopathic small fiber PN but so far it has not bothered my ability to drive. That is also one of my major concerns. I think each of us is a little different and may not quite experience the numbness the same way. I have been taking supplements since 2016 which I think are helping me. You can read my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. Other members have mentioned deep tissue massage, stretching and other techniques have helped some with the numbness. You might find the following discussion helpful:
Anyone use a device to allow driving without foot pedals?: https://connect.mayoclinic.org/discussion/device-to-allow-driving-wo-using-foot-pedals/
I would be irritated to say the least if my doctor brushed me off the way your doctor did. The Foundation for Peripheral Neuropathy has Find a doctor page and lists 4 different ones including one from MUSC (hope it's not your doctor!).
-- https://www.foundationforpn.org/support/find-a-doctor/
The link above also has some complementary and integrative treatments that may help with your symptoms. Have you tried any other type treatments?
I have had NO help from the "professionals". All of them dismiss my concerns. The most help was from a podiatrist and a vein specialist tried his best. "One size fits all" comments. This chatroom and online researching plus trial and error is where I get help. My advice is to stay away from all sugars, take nerve support supplements, good nutrition and be as active as you can. ALWAYS keep a positive outlook and continue to educate yourself on SFN. Your body and brain listen to you. I know it is difficult when your life is now different.
@jinxedroot93 I see Dr. Robert Carlile in Summerville, SC (near Charleston) and I wouldn't change to anybody else in the world! He is the most in depth and thorough than anyone else I've been to, and he was the one who finally got answers to my problems and a path to managing them! He really, really cares about people and his bedside manner is calm and warm. Even though he does not suffer from nerve pain, he deeply cares and will spend the time with you to answer any questions and keep things cost-effective. Good luck!
Wow, please tell me the name of that MUSC neurologist so that I do not see him or her. I am looking for a neurologist at MUSC to treat newly diagnosed(at Duke Med) small fiber neuropathy!
@jinxedroot93 i too sometimes feel insecure with the feeling I have with gas pedal and brake, and do exercises and stretching, and don’t drive in the dark so I have the ability to glance down at my feet. I had undiagnosed neuropathy that started 5 yrs ago at age 51. I lived in SC near Myrtle. Seems for every nit picking thing I was referred to MUSC. For the 3 different medical issues, One being neuropathy, I got ZERO results from them. It cost us a lot of $$$, time, and travel, a lot for a 51 yr old who now lost annual income to boot with this sudden disability. We decided to leave SC and move inland to the state of NC where I could have comprehensive medical care in my backyard vs having to travel for it. In doing so and transferring medical records to new home, and at the start of the Covid pandemic, I discovered a CT scan report from MUSC that was almost a year old and mentioned an abnormal growth in my neck. They never told me or my family, my admitting doc there, nor my PCP!! I got on it right away, trying to line up Dr’s in NC, and yes, of course it was cancer. Anyway, because of my personal experience, I have a hard time recommending MUSC for anything out of the ordinary, routine medical needs. Run, walk, or wheel yourself to better help. I did find Duke much more involved with neuropathy, but from SC, that too was a hard and expensive relationship if they only wanted to “watch” me and check in with me every 6 months vs having an action plan to try to diagnose. Good luck and safe driving!
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About three months ago I had a very hard time feeling the brake and gas pedal, I had to always look down to make sure I was pushing down in the brake. I started doing really hard deep tissue massage in my feet usually twice a day along with vigorous stretching exercise. I have so far managed to reduce the numbness in my left foot about 80% and right foot about 70%. I now have no trouble feeling the brake and gas pedals. Strangely enough now my fingers have more numbness comes and goes especially at night.