Introduction/advice/help

[mocheryl]

My name is Cheryl.  I'm 42 years old and have been "somewhat" diagnosed with small fiber neuropathy.  I just woke up one morning with symptoms of burning, tingling, heaviness in my left leg and foot which has since gone to both legs and feet.  I'm also having pain in my hands now.  I was initially (mis)diagnosed with stenosis and had a laminectomy.  My pain is now worse than before the surgery.  I've had an EMG which was normal, but the doctor did point out that it doesn't show small fiber neuropathy.  I've also had extensive blood work to rule out other causes. I had a second and third opinion after my unnecessary surgery and was told I likely never had stenosis and instead had neuropathy, most likely small fiber. I've been told that there is nothing more that can be done for me other than pain management.  My pain management dr. is trying to get insurance approval for a spinal cord stimulator.   I'm wondering if any other you have filed for or are receiving long-term disability for this condition.  Also, does anyone have the stimulator and if so, how successful has it been for your pain.  I know there is a test out there to determine for sure if I have SFN, but it's not widely given.  My pain management guy said it really didn't matter what type of neuropathy I have, the fact is I have it and the treatment is that same regardless of the type.  However, I would like to know for my own peace of mind if I really do have SFN and would be willing to go whereever I need to go to have the test.  Have any of you had the test?  If so, where did you have it done?

Thank you so much for you help!  I'm so glad I found this forum.  I really have been feeling alone in this and the doctor's haven't been much help in easing my concerns.

Cheryl

[AmyOK]

I'm 45 and have just been diagnosed by the Mayo Clinic with small fiber neuropathy. I've been through 8 terrible years and was also diagnosed with cervical stenosis and had 4 surgeries to decompress my supposedly compressed spinal cord and brainstem. The symptoms kept getting worse, so I was tested for every disease, until finally being diagnosed with SFN.

I see a pain specialist in the Chicago area, who just recommended the spinal stimulator to me as well. I've been getting nerve blocks in my legs, but they don't last very long, so he suggested the spinal stimulator. It just seems so invasive, and after having 4 surgeries that probably made me worse, I worried about getting worse with the implant. My sister tried it for the week trial, and it didn't help her pain. Have you done the trial for the implant, where they determine if it will help or not?

Do a search for a neurologist who performs a Quantitative Sudomotor Axon Reflex Test (QSART). It's how they diagnosed me at the Mayo clinic, along with a sweat test (which came out normal). It's much less invasive than a biopsy, which many patients think is the only way to be diagnosed with SFN.

I've applied for disability but was just denied, so I'll need to appeal. There's no way that I could work with this condition. My sister, who has been through surgeries, and has Autonomic Neuropathy (a subset of SFN), was approved for disability, but it took a lawyer after her 1st denial.

[binkeystone]

Just a small comment, have you tried yoga? I know you suffer from alot but I have done yoga for years and it does relieve so many points of pain and distress from my body. There is a great 25 minute tape/CD called Power Yoga for Beginners by Rodney Yee. Honestly it is a great stretch and not that strenuous and you can take it at your own pace in your livingroom. You are only 42 years old and that is very young. Your body will improve and your quality of life and I know it works for chronic pain. Go online to Yoga.com and get yourself a good yoga mat that helps you not slip and easier to do the stretches with the mat. I also recommend Yoga Toes, these are a silicone based toe stretchers that I put on my feet every day, I feel so energized and no longer suffer from leg cramps at night time. Well there is my speech, whatever way you go I hope you heal well and improve every day.