Has anyone successfully treated peripheral neuropathy? I'm desperate for relief of this agonizing pain!
I recently went to a new doctor and noticed he was located in something called the Professional Building. I felt better right away.
I have had Type 1 diabetes for close to 30 years, so I know a little bit about what you are talking about. The first site I think you should read is from the Mayo Clinic. Then you should read the other two web sites. (I am not familiar with either of these sites but I thought you should know about these options.) I have had various complications from diabetes, but as far as peripheral neuropathy, mine is at the beginning stages. Best of luck.
http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131/DSECTION=treatments-and-drugs
http://valleynews.com/TheValley/Stories/Health/General/Story~337497.aspx
http://www.advfoot.com/foot-pain-peripheral-neuropathy.php
Hi lavlav,
Thank you very much for your information and website links. I've been very proactive regarding my diagnosis of peripheral neuropathy. It took 3 years and 7 doctors to get where I am today, and that is I'm still in extreme pain. I've tried every kind of medication from anti-epileptics to anti-depressants, to Fentanyl patches, to narcotic pain meds, and where my pain was a 9 at it's best, it's now about an 8, and is still a 10 at times. I'm currently taking 150 mg Elavil at bedtime, and Norco 10/325 every 4 to 6 hours as needed. I'm just not satisfied with symptomatic treatment, I'm looking for the impossible-- a cure. But I guess that's not a viable option.
I'm not diabetic, I don't use drugs, I don't smoke or drink, I have no deficiencies. I've had numerous tests for autoimmune disorders, kidney, liver, thyroid, and lipid panels, I've had cervical and lumbar MRI's and a lumbar puncture. All of these tests I've had were negative.
I don't have cancer and am not having chemotherapy. I have no inherited disorders such as Charcot-Marie-Tooth disease and amyloid polyneuropathy.
I've had blood tests to check my level of vitamin B-12, a urinalysis, thyroid function tests, EMG (electromyography), a nerve conduction study (NCV) all of which were negative. (Unfortunately, it's not always easy to pinpoint the cause of peripheral neuropathy. In fact, if neuropathy isn't associated with diabetes, it's possible the cause may never be found.)
In January of this year I had a 'trial spinal cord stimulator' implanted in my back for a week. It didn't help. I think I've had every test that's available so far.
This summer I went to Dr. Aggarwal from Northwest Memorial Hospital in Chicago. He's board certified in neurophysiology. He gave me a thorough neurological exam, ordered more blood tests and did a nerve biopsy, a procedure in which a small portion of a nerve is removed and examined for abnormalities and it did give abnormal results. On the thigh the result value was 6.76 (normal is > 8.0), and on the calf it was 0.13 (normal is > 5.7), which is very advanced small fiber peripheral neuropathy. Dr. A told me about IVIG therapy which I did research on and it comes with a lot of severe side effects, and it's very expensive, so that's not an option either.
Thanks again,
Dawn
Sounds like you really have had a tough time. The only other advice I can give you is that I belong to several diabetes forums and have found them to be very helpful. You find information from others who are experiencing the same problems that you are going through that you don't get from a 20 minute visit from a doctor.
Hello. You sound very much like me. My diagnosis is Chronic Progressive Idiopathic Peripheral Neuropathy. In other words, the symptoms became the diagnosis since the idiot doctors never could figure out the cause-but it'll get worse for sure. It took 5 years just to get that diagnosis and going on 10 years since. Long story short, sometimes the pain is so bad I have some very grim thoughts. Neurontin was useless for me. I'm on Lyrica and lots of it. I also take Pamelor at night to help with the pins and needles... how much it helps seems to vary as much as the weather. So far I've managed without narcotics. I have no idea how. I just take it one day at a time, sometimes one hour at a time. I've had plasmapheresis done and it didn't work at all. Not sure I'll consent for it again. The risk just doesn't add up for me. I'm mostly numb below the knees, but that only means I still get the freaky misfiring nerve pain, but I couldn't tell if I was injured there unless I happened to see it happen. My hands and arms aren't affected as much as my legs, but sometimes they give me all kinds of grief. I've used wrist splints, leg braces, slings, whatever helped whenever I needed it. I use a cane most of the time, to walk, but I use a scooter when I feel i need to. I'm permanently disabled and 45 years old. If you want to hear about the silver lining on this dark cloud, sorry, there isn't one. There's no cure for me. I wish you better luck.
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