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Neuropathy Message Board


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Pasu, forgive me if I seem confused, as normal neuropathy treatments progress as follows: anti-seizure/pain meds as tolerated, Steroids if tolerated. then on to stronger things. The meds you are citing that your docs are useing are more for demeyelination conditions affecting the brain or central nervous system. I for one, have looked into trials relating to PN and CIDP using other than the standard '50+' stable of meds...most of which 80% of the US neuro comunity hasn't heard of. My neuro does not live in the dark ages?

It's just that the med names being put out are FAR from standard neuropathy, PN, CIDP or GBS treatments. Webbing up standard diagnostic protocols will/can tell you this. SO what else are they putting out as possibilities?

Most of the meds you're mentioning are targeted at other things - such as MS, but that doesn't mean that they're not used for other conditions - it's just that I would be FIRST on the trial que if I thought they were. Believe me, I would try to be a guinea pig IF I thought I'd have ONE pain-free minute a day while not being asleep!
Also, web up any possible meds - really really look up the prescribing aspects of those treatments - the clinical trials---specifically what those trials were for, s/e's -the whole kettle of fish... While we hurt, big time... there are times when caution and doubt should prevail. It's up to you to decide, but the doc isn't going to give you all the facts - it's up to YOU to learn know and decide.

I hope this helps!?
I'm glad you replied as my appt. is Monday and I am going through a similiar thought process. More is going on than neuropathy but I have no diagnosis. I seem to have an autoimmune problem affecting nerves, joints, gi tract and brain (speech, cognitive and memory) when it gets really bad. I also have gerd, hashimoto's thyroiditis and raynauds. CNS Lupus, vasculitis and MS are all strong suspects but I have been tested and tested and don't have enough to be diagnosed with any one of them, yet have some indicators for all of them. Oh, I forgot rheumatoid arthritis is a possibility too. I have not responded to neurontin or lyrica and prednisone needs to be 20+mg/day to help. My rheumatologist is also concerned about the direction the neuro is taking. Yet he has been the only dr. that has been able to help and I have been to many so - it is pretty hard to know what to do. Your post reminded me that I need to feel very informed and confident with whatever decision I make. I had not thought to research protocols-I'll do that. I just noticed that there is a board on autoimmune disorders and perhaps I should have posted there (?). I was hoping to find someone who has been through something similiar. Looks like I have some work and a lot of thinking to do.:confused:
pasu





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