Small Fiber Neuropathy

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I have recently been diagnosed with this by 3 punch biopsies.  I noticed both big toeswere numb and had some burning in the some of my left foot since before Christmas!  We have few good doctors here and I often feel I am managing my own health care. After weeks, finally saw a Neurologist here who did nerve testing then referred me to Stanford, waited weeks for that appt. they wanted their own tests so another couple of weeks before that was done. Then wanted these skin biopsies done, add another couple of weeks for tests and 2 more weeks for results, thus the SFN diagnosis.  During this time, my left foot has gotten worse and now my right foot is getting bad.  Have had pain in my left foot nobody can diagnose.  Fir months, the palms of both my hands look like they have been in water for an hour. Have shown at least 4 doctors who say nothing.  I am getting cramping feelings in my left foot and toes.  My left hand cramps. Neurologist said that is not a symptom but I showed him where I have read it can be!  Stanford is 1 1/2 - 3 hours from me, depending on traffic. Husband is getting tired of going there. I also see a GI doctor there.  Neuro suggested I go to their pain clinic, we have none here.  I don't feel they have tried to find a cause!  He put me on B-12 but no improvement.  I have been on Gabapentin fir at least 2 years for GI issues.  I have other medical problems too and now this!  Was wondering if anyone has this and would appreciate some info. Thanks.

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  • Posted

    Have vitamin b6 tested. If you are taking any vitamins with b6 especially. Too much b6 causes neurological Issues and some absorb it very well, too well, even from multivitamins and it will cause those symptoms, along with anxiety, insomnia, dizziness, depression, tingling, numbness, burning, twitching. Make sure they tested your b6. Many doctors don't test it for months and then someone find out their multivitamin or melatonin or something stupid has been causing all their problems. Good luck.

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    • Posted

      Thank you, Lisa.  No, seldom take vitamins dye to stomach issues.  However, per the Ckeveland Clinic web site on this, other tests should be done, B vitamins being some.  I have only had B-12 tested and cannot convince my OCP here to run the tests. He says he can't. What??!!  I still have not talked to the Neurologist at Stanford about this and have a call in to my Rheumatoligist about this.  Trying to make contact with these doctors is next to impossible.  They have called once and I was not home!  I just never feel well.  Have chriponicchronicchronic dry mouth and throat but tested negative for Sjorgen's.

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    • Posted

      Have b6, b1, and b12 tested. Some people have high levels of b6 without taking supplements so it needs to be checked. There is a small fiber neuropathy checklist somewhere online that shows all tests that should be run. I don't know where you are, but here in US, we can go to walk in labs and pay out of pocket. I would do that if your doctor refuses.

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    • Posted

      Oh you are in the US. Yes, just look up lab tests online and order your own. They usually accept them at tons of labs. They aren't super expensive but not free like at the doctor but it's worth the money to know what's really going on with you.

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  • Posted

    Oh and the hand thing happened to me on gabapentin, the pruned hand thing. My hands would prune immediately when put in water. It was very bizarre but that is a neurological response to water, it's not actually from the hands getting wet. Gabapentin did do that to me. I stopped it because it freaked me out.

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    • Posted

      really?  I have only noticed this the past couple of months.  Really, dictirs taje no notice as I am 67.  My 94-year old mother's hands don't look like this. The skin is also kind is shiny. My PCP to,d ne to turn my hands over and don't look at them!  My hands are like this all the time not just when I put them in water. Saw a Dermatologist who just told me to drink more water!  Due to the dry mouth and throat and mucus, I drink something constantly.  I have been trying to reduce the Gabapentin.  I started on 800 a day, split in 3 doses, yesterday, trying to reduce by 100 mg e enry week or two.  I feel so crappy, hard to tell if that is making things worse,

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  • Posted

    So many questions.  I am also having the feelings of myscke contractions in my legs and left hand.  Also, in between all my toes, it feels like sandpaper, drives me crazy at night.  There is no fungus, dry skin, etc.  I have trued Vit E oil and every type if lotion and nothing helps!  Have mentioned thistle the dictirs too and they, basically, have no response.  Anyone have this oribkem?
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  • Posted

    Hi Margot49, I suffer from peripheral neuropathy in both feet. Have been on so many different things that gave me side effects. I have been diagnosed with Fibromyalgia a couple weeks ago. That also effe

    cts feet and many other parts of the body. I take Paquelin for that, which can cause blindness. Anyway I was told to take B-1, Thiamine. You have to get it at health food store. I just went through a (what I call a 50,000 mile blood work up) and found that my Thyroid was out of whack, my vitamin D was high and Lupus by my GP. Going to Bone and Joint specialists now to find out Fibromyalgia. Between that and Neuropathy my feet don't know-how to not hurt. Not sure why your hands are doing their thing.Has your Doctor done a complete blood work up. If not I would ask him to. I had to ask mine, if I hadn't I would not know what I do. I also found through my own research my Thyroid can do some pretty wild things to your body. I pray you can find the answers your looking for. Wil keep eye on blog to see if you do. Jmac

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    • Posted

      Oh, I am so damn tired of trying to manage my own health care! Messaged my PCP and he said some were done and he can't do them. I called my Rheumatologist and he is supposed to be sending me an order. Never heard you can order your own tests!  I am sitting at a lab now having a 2 hour glucose test done. I just find shed a 2 hour glucose test this morning, my PCP begrudgingly ordered for me. I am trying to follow the Cleveland Clinic Protocol.  My GI doctor at Stanford suggested I see this Dr. Lin who is starting a diagnostic clinic there for people who can't get a diagnosis. I see him and go to the pain clinic in 10-11.  I still deal with nausea, chronic dry mouth and throat and now this burning and cramping.  Was trying to do errands yesterday and had to come home because of my feet hurting.  Actually, the top of my left foot was hurting, not burning, hurting. Anyone have this problem?  

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    • Posted

      Yes I do. It also left foot. Dermatologist told me it is called Schamberg Symptoms. It is a narrowing of blood vessels from knees down. I developed a place on top of my left foot. When I am on my feet running a lot of errands it will start hurting like crazy. It feels like the tongue of my sneaker is cutting into my foot. I started to notice veins in my feet are popping up all over. This syndrome has caused wounds on legs and feet take for ever to heal. I have a spot that has taken almost three months to heal. I can be doing something or nothing and start itching like crazy. I don't know if you have all those symptoms. Just thought I would see. I am with you on managing health. Everything I do to stay healthy has become a job! I try to do right only Tulsa be told I have something else. I hope your appointments give you an answer. It can be so frustrating and stressful. Will continue to watch blog to see what doctors say on the 11th. Best wishes and prayers for a out come telling you what is happening. Jmac

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