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All of us who suffer from this debilitating disease wish there were more facilities, more answers, more attention to PN. As I follow this welcomed site, there are more and more individuals that have finally realized that they are victims of this miserable disease. Almost all of us were misdiagnosed. It took me years, even a failed surgery to finally find out that my pain was PN.!! This site not only tells us that we are NOT ALONE, but mentions different efforts in the process to get relief. A BIG thing to remember is that there is no such thing as "One size fits all". Keep trying, keep reading, as there are many helpful posts here! Best Wishes!

Hi Mike, your journey with idiopathic neuropathy sounds idetical to mine. After 8 yrs of being diagnosed I nor neurologists have any answers. Up your Gabapentin, NO! I am on 300 mg a day and will only increase if I Feel necessary I have been through pt many times, accupuncture, red light therapy, stand on vibration machine, which I think MAY help, I go to gym 3-4 days a week ( which I know helps) take R Alpha Lipoic Acid, Bentofitamine (sp?) magnesium, turmeric, B12, Biotin. Do all these supplements help? I dont know, however afraid to stop. I have dismissed by 3 neurologists, stating if you need another appy just call. Another Dr told me there is nothing I can do for you. My GP is my Saviour, she helps, has suggestions on care. Had MRI of brain and entire spine, all looked go according to neurosurgeon. SOOO bottom line, take supplements, EXERCISE, gym and swimming in summer, even though I live in Fl. eat whole foods, and watch for scams. Read Mayo Connect daily, if possible. I have jearned more on this site than any Neurologis, my opinion, this disease is much too complicated, all neuropothies are different, therefore hard to treat. My dream is to have a doctor that SPECIALIZES in neuropathy ONLY! No such Dr. exists. Oh well, best wishes to all

I am learning that ALOT of drugs of all types are implicated in drug induced problems. Type in drugs that cause ( condition / ie: peripheal neuropathy - so many come up, tmi to paste. ) My rheum did some tests and PPI came up as causing drug induced Lupus, so did my hypertension drugs and out of 7 I was on, 4- yes 4 (maybe 6) were included in the list! Check the drugs you are on and see if you can get into an alternative. Drugs rarely get to the root of the problem, as we all know. They only mask symptoms. So they keep pushing more meds to cover more symptoms and on it goes..2 years ago I felt I was burning inside out. Pushed me to dig. I also have LIchen Planus, Oral LP Esopahgeal LP (ELP) and yep.. drugs are known to cause that too, but did the docs ever say anything about it or warn me? NOPE!!!! They just treat "the condition." w more meds. Eastern Med has more answers- Traditional Chinese Medicine.. 5 element theory. Acupuncture, herbs, massage to get the lymph going. I need to get into it once again. It all makes sense.

I spent a week at Mayo in Rochester trying to find a cause for my idiopathic small fiber neuropathy. I had every blood test and other tests you could possibly imagine and they found nothing and recommended nothing except taking the useless drugs I was already taking. I spoke with an MD in pain management about a spinal cord stimulator but I already had 2 trials with no meaningful relief. The future is bleak when it comes to neuropathy treatment. A few weeks back the non-opioid drug Suzetrigine was approved for short term use for moderate to severe pain. I wrote my neurologist about getting a prescription just to see if it helps. The drug I have been Anxiously waiting on called Engensis that actually deals with the root problem of repairing damaged nerves should have already been out but it looks like the company that owns the drug may be having problems. Pirenzipine also should have been out by now but the company that owns it is having financial problems. My guess is that spinal cord stimulation may be our best hope. Most drugs in research deal with symptoms and not the problem of nerve demyelination. The future does not look as promo as it once did.