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DiscussionPast Discussion: test to determine cause of Small Fiber Neuropathy
Neuropathy | Last Active: Sep 24, 2021 | Replies (8)Comment receiving replies
Replies to "Hello @lexilulu, Welcome to Connect, an online community where patients and caregivers share their experiences, find..."
Have had it about 2 years now. It took forever to get a diagnosis. My physician sent me to Spine Clinic. I had 3 different tests & passed all of them. So they sent me to a Podiatrist. He said it was in S1, the sensory core in my spine. I have problems L4 & L5 as well. He sent me to the Pain Clinic. They gave me an epidural that helped my back, but not my feet. After this I got referral for a Neurologist. They did a circulation test that turned out fine. With the paperwork I filled out, he said I had SFN. I was already on Gabapentin, max dose (4-3x a day). He took me down to 3-3x a day & added a anti-seizure medication, couldn’t tolerate pain in stomach. He prescribed a different anti-seizure medication… same problem. Then he prescribed another type of medication that caused me to be a total zombie, weighted down & couldn’t function… stopped that & he prescribed same type of drug but different one, same thing happened. There was nothing else he could do. I decided to get a 2nd opinion & went to another Neurologist & he was of no help either. They just want to push drugs. I went back to Pain Clinic, as the dr there told me if I didn’t get answers he could help as a last resort… a Spinal Implant. I put in for a pre-authorization to insurance, but in reading about this I was too scared to have it done & decided against it. Went to a Chiropractor who was Certified in Peripheral Neuropathy. I went with his program, very pricey, but it helps a lot. I have a Re-Builder, where I put my feet in water w/ electrodes that restore your nerve fibers; an Infrared velcro sock & calve that helps w/ circulation; and a massager for circulation. The only thing I can do is the Re-Builder, which is the most important. It really calms my feet down. Thirty minutes in morning & in evening. I also do the Infrared Velcro Calve strap 30 min on ea side. I am unable to tolerate the infrared foot pad & the massager, as it burns my feet & flares it up worse!!!!! I’ve had significant improvement, but am still suffering badly. It’s very life altering. I will put my feet on large frozen flax pillows when I need them while sitting & have to have them to put feet on when I go to bed. I can’t elevate my feet w/o flaring them up burning. I am pre-diabetic & take Metformin for approx. a year. This has been SO mentally hard!!!!! I’m very scared as SFN is a progressive disease, not curable & is fatal. Yet I’ve asked what I can expect & Neurologists will not answer my question because they say everyone is different. I can’t imagine burning pain in my body & arms as well. I’ve read so much on line & get no where! Help, anybody!!!!! I don’t drink, have always exercised & watched my diet my entire life, don’t smoke & am 64 yrs old. WTH did I do to get this?????
The supplement recommendations discussion is great, John, thanks!