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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

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  • al35091
    al35091 Hayhue

    Posted

    The only known way to determine peripheral neuropath is the "punch test" where two core samples of flesh is analysied to determine the number of small fiber nerves remaining.  I have peripheral neuropathy and ALA ( alpha lipodic acid tabs) have helped significantly.  You can research on ALA at the U. of Oregons Linus Pauling Institute where numerous tests have been conducted using it on known peripheral neuropathy cases.  It doesn't always make a significant differenct, but staticialy the number of cases that it has helped is encouraging.
    • al35091
      al35091

      Posted

      Correction on ALA, I should have stated R-ALA.  Its Alpha Lipodic Acid but there is a difference in the molecular struction.  That differentiation is what research testing has found promising for aiding in peripheral neuropathy.
    • Lodge
      Lodge al35091

      Posted

      Thank you for replying.  I doubt if they do this test in the UK, it would probably be considered too expensive.  

      I did read about alpha lipodic acid tablets some time ago, but some people said it can lower thryoid hormones and as I am hypothryoid I don't want to mess that up.

      I definitely don't want to take Gabapentin or any other drugs that just mask the problem and can have bad side effects.

    • Margot49
      Margot49 Lodge

      Posted

      Well, I have been on Gabapentin for well over a year and this neuropathy started while I was in it so it certainly isn't helping me.  The burning in my feet seems to be getting worse and both big toes are numb.

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