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Looking to connect with people who have non-diabetic neuropathy
Neuropathy | Last Active: Jan 25 6:35am | Replies (896)Comment receiving replies
Hello @user_ch98d0b5c -- I read from your earlier post that you do not know what the cause is for your peripheral neuropathy. I also have idiopathic small fiber peripheral neuropathy. They suspect hereditary but don't know. You also mentioned you have an upcoming appointment at John Hopkins with Dr. Hoke in September. I know it must be frustrating waiting and wanting some answers.
@user_ch98d0b5c have you found anything that helps with the pain?
I've found that I always wear socks, even at night. I mainly do this because I can't tell if my feet have been injured when I step on something walking around the house. I've found that socks made with bamboo fiber are really soft, stretchy and very easy to put on and take off. I guess they probably wouldn't help you if you can only wear flip flops. Have you tried any kind of shoe that doesn't cause you pain?
I was not sure by the title of your discussion if you were trying to locate members who do not have diabetic neuropathy or that do have diabetic neuropathy?
John
Replies to "Hello @user_ch98d0b5c -- I read from your earlier post that you do not know what the..."
I don’t think anything helps. I can’t walk without shoes, even socks make me nervous. In bed it feels like I’m wearing wooden shoes, however.
People who do not have diabetes
I have seen two neurologists. The first didn't seem to know or care. My primary doctor recommended a different neurologist. He was very helpful. I had never heard the term "small fiber" before and neither doctor asked about my background but I don't have a history or anything that might have caused it.
My doctor recommended nortriptyline (2 / 25mg capsules) in the evening. Now I sleep very soundly and most of the time it seems like I don't have neuropathy. Hoping it doesn't get worse.
May check out Calmare or scrambler therapy . Dr. Thomas Smith I have read is a believer for people with neuropathy and John Hopkins has done clinical trials.
Wanting to connect with those diagnosed with non-diabetic idiopathic neuropathy, multi sensory motor neuropathy. Have tried Senexas treatment, cell signaling using cups attached to feet and lower legs, sending electric pulses to damaged nerves, with no success. Now considering laser therapy but hesitating because of high cost and no insurance coverage. Much better success rate according to their patient testimonials but cautious because of trust since everywhere new treatments are appearing everywhere. They want around $2500 for 6 weeks of laser therapy, 3 times weekly. I declined nutrition and purchase of machine for home treatment, preferring to see if laser works first.
I'm Charlotte @charlie807, I'm a patient with neuropathy without diabetes. Mine was calll didn't check my nerves after surgery. I was in just as much pain after surgery plus my right leg was numb. I have pain in my feet sometimes sometimes my feet are so cold nothing warms them, then sometimes they are so hot I can't warm them. Only at night ! I cannot wear socks they feel as if my feet are on fire. I have one pair that's fine. Shoes I have one pair of shoes I can wear without feeling like my foot will break. I'm losing the feeling in both feet so balance is a big problem. My pain doctors tell me all research is being done for diabetics. This is very hard, very scary and the pain is awful and nothing really helps. Very depressing!
I do NOT have diabetes or the pain, except from my arthritis. That I control with Advil, Extra Strength Tylenol, Creams for controlling Arthritis Pain.
But the Neuropathy has advanced from feet to upper thighs with the heavy feelings, standing on sandpaper, extra sensitivity to cold, and the feel of feet and legs being asleep with no control when walking. Advice from my Primary Doctor was to see a Neurologist.
I am also trying to connect with people who are like me.
I have peripheral neuropathy also. Non-diabetic. I have had it for 8 years. In my feet. Was being treated with chronic back pain since 2010. Started with Tramadol now I’m at Norco/Hydrocodone. When neuropathy started it drove me crazy. Pain Dr. started me on Gabapentin. All I wanted to do was sleep. He said that would go away and it has. So I’ve been taking a pain pill and Gabapentin for a long time. I’m 78 soon to be 79. I have to wear socks and shoes during the day. Can’t go barefooted. I also wear bamboo socks and will sometimes at night. Or use Voltaren on my feet before bed.
I think mine is hereditary except my older brother has it in his feet and hands from Vietnam. Agient- Orange.
Sometimes mine really drives me crazy. I take 600 3x day and the new Nurologist’s says I can increase to 900. I’m starting out at night time only.
Is this typical for any of you?
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Hi, I am new here and I cannot figure out how to post. Can you give me some advice? Thank you!