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Desperate: Is there any hope for neuropathy?

Neuropathy | Last Active: Oct 23 6:49pm | Replies (118)

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@dlydailyhope

@cecelia19
I am a 55 year old female with idiopathic small fiber neuropathy/peripheral neuropathy, congenital spinal stenosis, degenerative disc disease and osteoarthritis. This all was diagnosed when I was 42 and 47.

My neuropathy started in my feet with burning/pins and needles and especially worse in warmer months. I started taking alpha Lipoic acid, acetyl l carnitine and other nerve health supplements and it helped reduce the symptoms. I used capsaicin creams on my feet, too. I never had a bad reaction to the supplements or creams.

Have you been diagnosed with small fiber neuropathy by a neurologist via a skin punch biopsy? Have you had full bloodwork panels done for neuropathy? My rheumatologist and neurologist did very extensive bloodwork to try to get to the cause of my symptoms. Are you deficient in B12 or at toxic B6 levels? Have you ever been exposed to toxins throughout your life?

Have you ever had EMGs/nerve conduction studies or MRIs done by a neurologist to check for spinal cord or nerve root/nerve compression/radiculopathy? My spinal stenosis and DDD has caused cervical/lumbar radiculopathy to arms/hands and legs/feet plus neurogenic claudication causing pain/weakness/numbness in back/hips/buttocks/legs/feet.

Don’t give up hope and keep asking questions and reviewing your list of symptoms with doctors to get to root cause.

Btw…I also have autoimmune Hashimoto’s thyroiditis and alopecia areata. I have read that small fiber neuropathy could be caused by an autoimmune attack in your nerve cells.

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Replies to "@cecelia19 I am a 55 year old female with idiopathic small fiber neuropathy/peripheral neuropathy, congenital spinal..."

@cecelia19
I forgot to mention that Cymbalta/Duloxetine is prescribed for chronic pain, neuropathy, osteoarthritis and fibromyalgia. Not sure if this is something you would want to talk to your doctor or neurologist about to see if it can help you better manage the nerve pain.

I can’t thank you enough for your detailed reply and description of your condition. I haven’t had most of those tests and have to wait to see my neurologist until 10/8 as he is out on a medical leave. My PCP is referring me to U of M’s neurology/pain department (I live in Michigan) but will go to Mayo if they can’t give me an answer. I’ve been to Mayo eleven times, ten of those with family members who have been ill. I know my way around the joint and feel very comfortable there. Your response makes me realize that there are many more avenues that need testing than I would have anticipated. Today I had some relief from the Medrol steroid dose pack I started this morning. I assume that means there is an inflammatory component to this pain. Are you comfortable now?

I am going through all of the tests right now. What kind of reaction did you have to the acetyl carnitine have you had and what other nerve supplements other than alpha Lipoic acid have helped you. What were the results from the rheumatologist and where are you now with what your doctors suggest?