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  • October 15, 2017 at 6:20 pm

    My first neuro made the distinction being 8 weeks. If it went beyond that we were probably looking at CIDP and less than that GBS. Of course everyone can be different but those were the general guidelines they told me.

    October 13, 2017 at 8:18 pm

    Thanks GH. I’ll take a swing by and see how small they are and if they grip my typical water bottles. 3/4″ may be too small.

    By the time this CIDP is done with me, Im going to be wearing a Batman utility belt! LOL

    October 13, 2017 at 9:00 am

    That tractor supply one is the smallest Ive seen. Too bad it shows no shipping available and closest store in stock is 75 miles away.

    I have had a Leatherman for ages, long before ever hearing of CIDP. At least on the one I have, the jaws do not open enough to grip for turning leverage. Looked at SOG and Gerber, but possible models looked discontinued.

    A mini strap wrench…hmm, I’ll take a closer look at those.

    Thanks

    October 7, 2017 at 10:54 pm

    Similar to Terri232, I received a flu vaccine and a pneumonia vaccine on the same day. Within a few weeks, maybe 4-8 if not shorter, symptoms started presenting and CIDP kicked in hard.

    I’ve had some neurologists say there could be a relationship and do not get flu shots now, while other specialists who seem quite knowledgeable and do research say there is no reason not to get it.

    October 4, 2017 at 9:49 pm

    Good question.

    I got the flu shot a few weeks before my CIDP kicked in a couple of years ago. Last year and this year my neuro has said don’t get it.

    Yet at last years conference from what I heard and at a regional symposium last month, the medical panelists during Q&A said they had no reason not to get it.

    So, Im not quite sure what to do.

    October 4, 2017 at 9:45 pm

    I’ve been on varying dosage of prednisone in conjunction with IG. Even at 60+ I dont feel there is much improvement. And as little as 20, I start getting all of these nasty, nasty side effects.

    Good luck

    October 3, 2017 at 2:52 pm

    Thanks Bryan. Wish my 1.5 gm/kg @2 weeks would get me back to somewhat normal strength and walking better again but its not happening, nor is it lasting 2 weeks like it once was. Playing golf again is a distant memory. Awaiting next neuro visit for an updated plan.

    October 2, 2017 at 1:27 am

    So I went with the new neurologist and now get IVIg treatments every week.

    If you dont mind me asking, how much do you get weekly? Im at 2 weeks but Dr seems hesitant to go more frequently or higher doses.

    October 1, 2017 at 6:34 pm

    . You also have to be able to document your medical condition. It may be a little too early for you.

    To the OP, as you have no DX nor started TX, I agree with GH it may be too early. Not necessarily for this condition, but I have known some that required multiple applications, appeals, lawyers, etc. On the other hand, others submitted info themselves and were approved on the first attempt.

    Best of luck.

    September 27, 2017 at 8:35 pm

    If you go the IVIg route, make sure to have the serum delivered slowly. It makes all the difference in the world.

    Are you referring to side effects or effectiveness?

    The effectiveness.

    First I’ve heard of that. Any references discussing? As I have tolerated well, Ive had them bump up my infusion rates

    September 27, 2017 at 12:28 am

    If you go the IVIg route, make sure to have the serum delivered slowly. It makes all the difference in the world.

    Are you referring to side effects or effectiveness?

    September 24, 2017 at 9:37 pm

    It is possible to recover from CIDP, but in the meantime, you need treatment and the earlier the better. A week and a half is a long time to wait if you are deteriorating daily.

    Assuming its CIDP, all I can say there is hope.

    These…but getting right Dr and right treatment seems to be key.

    There is much not known about this disease and apparently a lot of trial and error unfortunately.

    Im worse than when I started, but still working on it and staying as positive as I can

    September 24, 2017 at 9:27 pm

    why do you need a second opinion?

    It’s only my opinon, but any rare, complex disease is worthy of a second opinion to educate yourself and understand options to figure what is right for you. If your current Dr has seen 50 patients and the 2nd opinion has seen 500, isn’t it worth the effort?

    but yes, talk to your current neuro while awaiting consultation

    September 21, 2017 at 4:35 pm

    But it is known from studies that PE generally leads to better recovery.

    Would you happen to have any links or a location to search for? What I had found indicated about the same but maybe it was an old study.

    September 19, 2017 at 10:59 pm