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Dx with small fiber neuropathy yest - doesn't seem right?

Posted , 11 users are following.

Hayhue
Hayhue

Hey all,

Yesterday I had a nerve conduction test and the doctor diagnosed me with small fiber neuropathy. Everything I have found online about small fiber, in my opinion, doesn't seem to fit me so that's why I'm here. I haven't found out WHY I have it yet as I'm waiting on the bloodwork to come back (there was a lot). Can someone please offer me their opinion?

I do have some unresolved sugar issues and I also have hypothyroidism. I've had a CT/MRI of brain (without contrast) that was normal, a VNG that was negative for the brain part (didn't make it through inner ear part cause I freaked out), and had the nerve test yesterday. I have bilateral forearm "numbness", bilateral shin "numbness", some face and tip of tongue "numbness" and I get muscle twitches in these areas (NOT tongue) and tightness in my thighs. It comes and goes.

My upper and lower spine seem to ache at times causing some nerve pain in my arms (if it's upper) and some in my legs (when it's lower); That goes away with heat and ice. I do get brain/body zaps as well (the electrical shock feeling in head that travels through body) but mainly when eyes are strained.

The doc mentioned balance problems due to feet numbness but I have balance problems now with no feet numbness. At times, it is terrible (hence having the VNG). It starts to feel as if I'm walking on uneven pavement the farther I go and then if I push myself too hard, it still feels like I'm moving when I lie down. I also randomly feel as if the floor dropped out from under me when I'm walking and even when I'm sitting.

These are the main symptoms I have. I also get a lot of dizziness with the above mentioned. I also don't have any muscle weakness, just the spasticity and balance being bothersome.

I know every case is different but does this seem right to anyone? I've been dealing with this all for a year, this is my second neurologist (he came with excellent reviews) and I'm exhausted.

Thank you!

2 likes, 21 replies

21 Replies

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  • Kersey
    Kersey Hayhue

    Posted

    I have peripheral neuropathy - have had it for about 15 years.  I can relate to some of what you are saying  I started with'sock' numbness (feet and lower legs) and I now have some 'glove' numbness (hands and wrist).  the electric shock pains were the worst to cope with - they have eased somewhat.  I am on amytriptyline.  balance is crap now and I do struggle with walking - I use either two sticks, or a rollator (crutches make my shoulders ache).  I have a mobility scooter for longer distances.  and yes my mouth area has some numbness - am waiting to see the neurologist to see about this.  I have fallen four times in the last six months - luckily no injuries but my knee can get painful after this and I have knee joint problems anyway.  Dizziness - yes but no idea why.  It is exhausting - and horrible having to admit that you cant do what you want to do.  eventually you do have to accept it though and just do the best you can

    all the best and you will find this forum a good support

    • Hayhue
      Hayhue Kersey

      Posted

      Thank you so much for your reply. I love this community they've helped me so much trying to figure things out. Everyone is so nice.

      Is small fiber a part of peripheral neuropathy? This is so new to me it seems it all happened so slow but fast. I'm only 28.

      It's nice to know there are people that can relate.

    • jane95340
      jane95340 Kersey

      Posted

      Are you gluten, wheat, soy, corn intolerant? 
  • marshall71
    marshall71 Hayhue

    Posted

    I have all your symptoms my nerve test was normal bloods too no MRI done on Brain only on lower back which turned at as DDD Dizzy spells balance problems eyes are stained too even new glasses and eye test did not help my legs and feet go numb in some toes I feel nothing when I left them seen 6 specialist sept having a skin biopsy done one specialist has said it small fibre it does not show up on nerve test also si joint pain in my hip.

    The meds I take are

    Gabpentin 300mg 3 times a day

    Slow -release tramadol

    Cinnarizine 15 mg 3 times. a day

    Capsaicin cream 2-3 times a day brilliant for my feet and legs

    • Hayhue
      Hayhue marshall71

      Posted

      I read online that small fiber doesn't show on nerve test that's why I was concerned if this is what it is.

      My balance is very bad today it keeps feeling like the floor is shifting.

      He offered me gabapentin but I don't have much pain. My biggest problems are my legs feeling heavy and tight and my balance. Other than that I feel pretty alright.

    • jane95340
      jane95340 marshall71

      Posted

      I am unable to tolerate capscin cream as it caused an exacerbation on bronchospasms that affected my chest for over three months.
    • al35091
      al35091 Hayhue

      Posted

      The true method of diagnosing small fiber periheral neuropathy is via a "core sample" of your small nerves at your leg or arm.  A plastic surgeon usually does the "punch."  The small is then sent to a competent lab for anyalis  of the number of small fiber nerves and how many have degenerated.  The "punch" removal of flesh is done numbing the area, but it takes a bit to completly heal. 
    • jane95340
      jane95340 al35091

      Posted

      I was interested in your comment about the punch test. Are you in the UK? I have not heard of this test  before.
    • Kersey
      Kersey jane95340

      Posted

      I am in the UK and have never heard of the punch test
    • al35091
      al35091 Kersey

      Posted

      No, Because small peripheral neuropathy cannot be diagnosed by any other method, other than counting the nerve fibers for a given area under a high powered microscope.  I had my diagnose done by Mass. General lab.  The test showed that the number of nerve fibers had become stripped of there protective sheath.  Hence the increased sensitivity to pressure and temperature with the accompanying "stingers."
    • jane95340
      jane95340 al35091

      Posted

      Do you have the contact details of Mass. General Labs please?

    • al35091
      al35091 jane95340

      Posted

      I can't help you with the details of who to contact at Massachusetts General.  My neurologist had the plastic surgeon send the two biopsies to a address unknown to me.  When he received the results of the small fiber nerves, he notified me that it was as he suspected - peripheral neuropathy.
    • Lodge
      Lodge al35091

      Posted

      I am sure this is what I suffer from.  

      My right foot feels so sensitive to anything touching it - like it is red raw and prickly -  and quite often feels so cold, just like I am standing on ice - yet it isn't cold to the touch.

      Is there anything that can help with this.  It has certainly got worse over since it started just over two years ago.

    • liz61359
      liz61359 jane95340

      Posted

      I've had the punch biopsy, my Dermatologist did it. Didn't hurt at all.
    • Margot49
      Margot49 al35091

      Posted

      I just had this done yesterday at Stanford.  The Neuro dictir's PA dud it.  She took a biopsy from each foot just under the ankle bone on top and one from my upper left thigh.  Lidocane stung a little.  I wore sandals and the strap was hitting the sights. A bit uncomfortable sleeping last night if I laid on them.  Saud to keep ckean for about a week and use Neosporin. They send them off to some lab in New York. Results in about two weeks.

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