Finding a Doctor
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February 13, 2013 at 5:47 pm
Hi all…my husband was diagnosed with GBS in September 2012. Since then we have been to several neurologists and are becoming thoroughly discouraged. They all seem to believe that the pain and numbness he is suffering with is nothing more than annoying. One neuro we saw at UAB actually told him that the pain couldn’t be more than a nuisance, and that all he had to do to make it better was work less. One neuro prescribed Cymbalta, but the side effects were way more than he could handle. He is now being told to increase his Neurontin to 2,700mg per day, which he is extremely hesitant about taking. I feel utterly helpless that I can’t seem to find someone to help him. We live in central Alabama, and I am wondering if there is anyone else out there in Alabama that has found a doctor that specializes in GBS that is caring and compassionate. I am willing to travel wherever we need to in the state in order to find him the treatment he deserves.
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February 13, 2013 at 7:14 pm
Some people have success with Lyrica for nerve pain. Others on the site have taken neurotnin as high as 3600mg. Depending on your husbands job it may take a while to get used too. Somealso go to pain management clinics. Try calling the foundation and ask for a doctor that is affiliated with their “center for excellence” or something like that. As well, they might be able to direct you to a doc if no one responds here. You are right to look for another doc if you feel they are not being responsive to your husbunds concerns. It took us 3 docs before we got to our current fourth to get a proper diagnosis. Good luck to you
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February 13, 2013 at 7:20 pm
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.
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