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Just Diagnosed with Small Fiber Neuropathy
Hi . I am a bit scared here. Had positive skin biopsy for small fiber. What tests will the Neuro ask for to find causation? Was diagnosed prediabetic in Fall. My Dad had similar issues and eventually lost a toe. Always felt he was walking " on fire ". My feet have similar issues. This is just one big Ick. Boo
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IVIG is supposed to help small fiber neuropathy but does anyone know, does IVIG work on small fiber neuropathy if Immunoglobulin levels are normal?
You might look into Medical Rebuilder. I've had this device since being diagnosed 5 years ago and use it regularly. I think it has helped weakness and pain. I've also visited with others who have been helped. It's not magic, of course, and somewhat expensive - about $800 and not covered by insurance.
I have the same question, but my neurologist dismissed it saying insurance will not pay for it. I have an appointment with another neurologist at Stanford but not until December, In the meantime still pursuing this question with research but read somewhere if a genetic connection can be made you have a chance of getting it approved.
Hi @ruthofanne and @pmogen
IVIG is used for specific types of peripheral neuropathy, primarily chronic inflammatory demyelinating polyneuropathy (CIDP), which is a very rare condition.
CIDP causes more than just sensory problems (like pain). It also causes progressive weakness, lack of coordination, etc..
IVIG treatment is very expensive, and most insurance won't pay for it, unless you have the proper diagnosis.
There are also adverse reactions, as with any medicine.
Perhaps that is what your neurologist was trying to tell you.
Good luck!
Jeff
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1 ReactionI have not tried it but I have read that low dose naltrexone has worked for many people. If you haven't yet tried it, ask your doctor. Good luck.
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1 ReactionI have painful small fiber neuropathy in both feet. It came on me after a nine day hospital stay with critical low sodium. I also have fibromyalgia, arthritis, chronic stage 3 renal failure si cannot take anti inflammatory drugs.
I researched Lo dose Naltrexone. My arthritis doctor prescribed for me at my request. It was an amazing drug for me THAT WORKED!!!!
Helped so so so much however I did not tolerate it because for me it caused my blood pressure to elevate!!! By raising my blood pressure it gave me a horrible headache. I had to stop it. I was very disappointed. But the benefits it gave me DID NOT out weigh the risk of causing a stroke.
Lo dose naltrexone caused my blood pressure to elevate so was unable to take it. Lo dose worked AMAZING for my symptoms.
My doctor said it may only work for a certain type of neuropathy that is very rare. Not mine. The only thing that has worked for my constant burning pain is a combo of pregabalin and an opioid patch. I have tried everything many things but most I was unable to tolerate.
After 3 years of denials, I was able to try 2 rounds of infusions - IVIG did begin to help me - then insurance denied it stating I showed no improvement (without me having a doctor appointment and without talking to me) - I am pretty sure that is grounds for a bad faith claim - on the part of the insurance company not acting in good faith - but that is a separate issue - yes - the IVIG did begin to help. Interestingly, I also have No to very low IgM.
Hello @jfouts1979, Welcome to Connect. You do have a right to appeal health insurance claim denials - https://www.healthcare.gov/appeal-insurance-company-decision/appeals/ It's good to hear the IVIG did provide some relief for you.
Are you able to share a little more about your diagnosis and your symptoms?
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