Karen6542

Your Replies

  • June 6, 2018 at 10:02 pm

    Hi Steve,
    You haven’t been in here in quite some time! How are you doing?
    I have a question for you, and anyone else who has CIDP. Yu mentioned some pain. My father had CIDP, and was in a large amount of pain, especially along his spine. Is pain part of CIDP?

    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 pm

    I’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 pm

    I 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 am

    Thanks! My zip is 14094. Lockport, NY, near Buffalo and Niagara Falls.

    January 26, 2018 at 11:09 pm

    My dad had a hard time of it, his last decade or so of life. First, he lost a kidney to cancer, but we all thought he was so lucky because he didn’t need chemo or radiation after surgery. A few years later, the other kidney failed, why, we don’t know why. He was on dialysis, and was aboout to be put on a list to recieve a new kidney. to do so, he had to get all his vaccinations up to date. A titre showed all he really needed was a flu shot, which he got. Shortly afterwards, he began to experiance weakness and numbness in his legs. His doctor almost immediately suspected GBS, and got him in with neurologists at the University of Buffalo. They very shortly diagnosed him with CIDP. He had a vast improvement-he went from being barely able to walk with a walker, to being able to go up stairs unaided. And then, a relapse. this time, the paralysis and numbness spread to his hands and arms. In the end, he could barely swallow, and died of aspiration pneumonia, a little more than 5 years ago. the neurologists agreed, it very well could have been the flu shot. All the while my dad was going through all this, we wondered, what did he do to anyone, to deserve this? When my dad was younger, he was the first to step up when he saw a barroom bully picking on someone smaller. He was the first to help build your deck, your new garage, fix your car in the driveway, change your flat tire on the coldest day of the year so you could get to work. He was always there, to help anyone, to offer a shoulder, to give advice. He was funny, he had street smarts, he had a definate sense of right and wrong. He loved dogs and kids, and they loved him on first sight. Why do things like GBS or CIDP happen? Who knows. All we can do, is try to find not just cures, but preventions.

    January 26, 2018 at 10:52 pm

    I 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 pm

    I 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 pm

    Thanks 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 7:56 pm

    My father, who was in dialysis, had to have a flu shot in order to be put on the transplant list (all his other vaccines were up to date). Not long after that, he began with the numbness. GBS was diagnosed at first, but when the symptoms worsened, and another neurologist saw him, CIDP was the verdict. he underwwent IVIG and the usual drug therapies, and was in a remission that allowed him to walk without a walker, even to go up short flights of stairs. Unfortunately, this did not last long, and before long, he was in a motorized wheelchair. He ended up in a hospital bed, at home, as my mother would not allow him to go into a nursing home. He died on January 28th, 2014 of aspiration pneumonia.
    None of us knew of that you could get money if a flu shot was suspected of causing CIDP, which my dad’s neurologists strongly suspected. Although money was not an issue (God bless the UAW for getting him such wonderful retirement health benefits from General Motors! If you think unions are harming this country, think of how my dad’s quality of life would have been, had he been shuffled off to a nursing home as a welfare patient, where overworked aides and nurses would never have given him the quality treatment he was able to have with therapists, in home aides and nurses, specialists, the treatments they prescribed, and that wonderful motorized wheelchair), the money my mom could’ve received could’ve been donated for the care of someone less fortunate.

    June 24, 2017 at 7:35 pm

    i 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!