Hi mrsD, I just found this board and joined. My wife is two years from her diagnosis of Guillain Barre Syndrome (GBS), with peripheral neuropathy ever since. At least, we were told that's what she has. From reading here, I'm wondering if PN is right. Nothing has worked to even put a dent in her PN pain, but maybe we've been going after the wrong thing? Your posts make sense to me, and I'd appreciate your opinion.
Your post intrigued me:
Quote:
Originally Posted by mrsD
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Basically if you 1) get rid of triggers, and toxins, 2) fix any secondary cause like diabetes, or vitamin deficiencies, thyroid problems, etc. -- you will at least arrest progression and/or improve. But 100% improvement is not likely for anyone.
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Basically PN is an environmental problem. (except for the hereditary folks, but still for them they have environmental and toxin triggers too). You will find if you search here, some people become more able to function daily once they fix their particular problem. But it takes motivation, and will, and energy to become your own advocate and some do not choose that path. Sadly many doctors don't offer much either.
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Your most likely improvements will come from fixing nutrient deficiencies and adjusting diet to get rid of sugar and perhaps gluten if gluten is your trigger. If you continue with a drug, or toxin exposure, your chances of improvement are much less if that drug or toxin is your problem.
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Early on, we were careful to have a regimen of B-complex vitamins for her, but after a month or so, there was no change in the pain level, and my wife no longer takes the vitamin supplements. We continue to search for an effective treatment.
My wife's GBS left her with axonal damage, confirmed by nerve conduction studies. Although she has regained most limb movement, she has never been able to rid herself of the full body pain.
Do you think she does not have PN, but something else? If her pain is PN and can be treated with vitamin supplements and the like, what have we been doing wrong? She is in constant agonizing pain, and we've seemingly tried everything. Do you have any thoughts on this?
thank you,
Dave