Karen6542
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June 6, 2018 at 9:53 pm
That’s interesting. My father had CIDP, and worked 37 years in skilled trades for an automotive parts factory. He was exposed to all sorts of chemicals later labeled as carcinogenic, and either outlawed, or subject to using many forms of protection when using. Also, our area, Western NY, has a huge incidence of various cancers due probably to the huge number of chemical factories, and factories that use chemicals in manufacturing.
It makes me wonder, how much his years long exposure to chemicals contributed to his CIDP.June 6, 2018 at 9:47 pmI’m glad you have a doctor who fesses up, that he is clueless about whats going on with your health! Too many doctors, in my experiance, would rather change the oil on a 85 Ford Aerostar, than admit they need another medical opinion!
Please let us know how you make out at the Cleveland Clinic. If you are in New York State, the University of Buffalo also has a great neurolgy department, and maybe they are closer to you. I beleive the GBS/CIDP folks have the contact info. Please let us know how you make out! We all care!June 6, 2018 at 9:41 pmI would gt a complete physical, and tell your neurologist as well. Maybe its nothing. How is your blood pressure? Mine is always low-the last time I had it taken, it was 90/60. I’m 59, a little overweight, I walk a lot for exercise as well as chase my year and a half golden doodle around, and despite recent surgery for a torn rotator cuff, in great health. My mother also has low blood pressure like this. We’ve both been warned by our doctors to not stand up to quick, and when we do stand up, to take a second to make sure we’ve got our bearings. Since my blood pressure is lower than any of my doctors, and I feel fine, no one is worried about it. But, given your GBS history, and the fact that there is so much about GBS that we don’t know or understand, I’d call the doctors.
May your God bless your health!January 27, 2018 at 1:52 amThanks! My zip is 14094. Lockport, NY, near Buffalo and Niagara Falls.
January 26, 2018 at 10:52 pmI was surfing ariound the site, and it seems practically every thing I click on, gets me a “504” page; it says that the page took too long to load? It didn’t seem to, to me.?????
January 26, 2018 at 10:27 pmI like to shock too. Your story about telling folks you were mauled by wild animals reminds me of when NY had paper drivers’ liscences. I put mine through the washer more than once, and would have to go down to Motor Vehicles to get a new one. the people who work there were the most humorless people you’ve ever seen. Once, when the woman asked me what had happened to my liscence, I told her that I worked at the Niagara Falls Aquarium, and for a joke, my co workers threw me into the shark tank. the woman just nodded.
June 24, 2017 at 11:04 pmThanks Jim for the link! As luck would have it, I live not far from where this company is headquartered in Williamsville, NY. I also could make an easy and quick detour on the way from work. the only thing is, the site is not clear on whether the headquarters also has a donation site. I sent them an email asking if they do, and hope to hear back from them on Monday. Thanks again!
June 24, 2017 at 7:35 pmi know the government has a site for clinical trials. i don’t know the web address, as I looked at it sometime ago, but i remember that you enter in the name of the disease or condition, and they tell you if there are any active, recruiting or completed clinical trials. CIDP was in there (I looked at it when my late father had CIDP) but I don’t know about GBS. They also listed a LOT of foreign hospitals and universities that are in on the listed clinical trials. I don’t know where you are living now, but maybe you could do some research, and see if there is a trial going on where you are. Good luck, and your God bless you! Let us know how you make out!
