Your Replies

  • August 23, 2017 at 10:54 am

    The Foundation seems to be partial to Immune Globulin. To look at this website you would think that IG was the only treatment available.

    January 7, 2016 at 2:58 pm

    I had double vision with CIDP but it went away completely. The eye doctor told me that the muscles on one eye were not working, so he put a patch over my good eye which forced the bad eye to move. It worked.

    November 4, 2015 at 3:15 pm

    I should consider myself lucky: only have tremor on my left side so I can function. The tremor started while I was in the hospital almost completely paralyzed. Only noticed when I improved some and was sent home. Primidone takes care of it but I’m afraid of it since it makes me so dizzy.

    January 28, 2015 at 11:35 am

    I was stable, walking with a cane, getting the IVig every four weeks. When the neurologist tried to extend the treatment schedule to every eight weeks I relapsed. At six weeks with no treatment the symptoms came back. So I am re-loading. This has been going on for five years.

    November 28, 2014 at 11:00 am

    I have had CIDP on and off for four years but last winter I developed GBS probably caused by a bad case of shingles. I was never in need of a respirator and recovered enough to be able to walk with only a cane. Right now I can say I am again in remission with some dissability and receive daily Prednisone and IVIG every four weeks. Wish I could stop treatment but for the fear of relapsing.

    November 29, 2013 at 3:03 pm

    My case is somehow similar to your mother’s, KKearney. I am 82 years old and I was dignosed with CIDP four years ago after blood tests and many MRI’s showed no sign of stroke. With older patients that is what doctors first suspect. Nerve conduction tests also showed demyalation. I live in a small Florida town but once I had a dignosis I only have to travel to the nearest small city where a young neurologist monitors my treatment. There is so little known about CIDP and every case is different that I see no advantage in looking for a specialist.

    November 25, 2013 at 9:36 pm

    My left hand trembles constantly, specially the thumb. It is there all the time, nothing seems to make it better or worse and my neurologist didn’t have any suggestions so I just had to learn to live with it.

    August 4, 2013 at 5:14 pm

    This is important.

    August 4, 2013 at 5:03 pm

    I live in a small town and can’t even hope to find a local doctor experienced in treating CIDP. I went to the neurology department of the University of Florida for my original diagnosys and luckily, a young neurologist trained in that department has set up practise near by. Since there is so little known about CIDP, the main requirement is that your doctor takes interest in your case.

    August 4, 2013 at 4:47 pm

    My experience with Inmuran was BAD, BAD. I had been in partial remmission with monthly IVig when my neurologist tried Inmuran. After a couple of months I developed a bad case of shingles and a week later I was in the emergency room completely paralysed. Six weeks later and several rounds of IVig I went home and started learning how to walk again, first with a walker and later with a cane.

    April 12, 2013 at 10:11 pm

    I developed a terrible case of shingles at the same time that my CIDP, which was on remission, came back like never before. I was completely paralized for weeks.

    April 12, 2013 at 10:06 pm

    I have been getting IVig off and on for about four years; sometimes once a month or even less frequently but the symptoms always come back. Now the neurologist ordered the infussions three consecutive days every other week. No explanation.

    August 16, 2012 at 1:55 pm

    About CIDP treatment on patients over 80: I will be 81 next month and have been getting IVig off and on for three years. Right now we are taking a break because it was giving me terrible headaches. I am almost in remission; walk well, climb stairs and use my hands but my balance is poor and I have several odd symptoms. The problem with CIDP at my age is that it is hard to separate its symptoms from those of old age.

    June 15, 2012 at 12:57 pm

    I had Prednisone in the hospital and for a time afterward until the new neurologist put me on the combination IVig and Solu medrol. He thinks that long term use of Prednisone is bad for the bones.

    May 18, 2012 at 1:33 pm

    I showed a copy of GH’s answer to my neurologist and he said that I need to have the SoluMedrol infussion with the IVig because it protects from the IVig’s side effects which he described as very serious.