Reply To: Finding a Doctor
Unfortunately Baseballmom, the symptoms you describe are often misunderstood by neurologists as being nothing more than annoying. I still suffer agonizing burning and stabbing and pricking symptoms, particularly at night and even after almost three years post AMSAM GBS. It seems that pain specialists rather than neurologists in the UK take a more sympathetic view of the symptoms of peripheral neuropathy and although recognised as being difficult to treat they have prescribed a multitude of medications over the years. In all honesty, I can say that while strong opiates such as fentanyl and oxycontin do work for very limited periods of time before tolerance builds, the only medication that has made any long term, real difference is Gabapentin (Neurotonin) and at a dose of between 2,400 and 3,600 mg per day. The side-effects do definitely become more bearable as time goes on, as does perception of pain. I have found that accepting the pain and not constantly hoping it will disappear has helped me, but more as a coping mechanism.
I really hope you manage to find a compassionate medic and that you get some relief from your symptoms.