Your Replies

  • GH
    August 20, 2019 at 4:24 pm

    When I have had extractions, they were always done under some kind of sedation. That’s what I would recommend unless it is a particularly easy one. I don’t understand what GBS has to do with it.

    August 20, 2019 at 4:21 pm

    None of the supplements you mentioned is a substitute for the standard treatments for CIDP. Prednisone is not normally taken long term. I took it for about a year, periodically reducing the dosage, while transitioning to an immune suppressant drug. Eventually, I tapered that down to zero as well, and now I take nothing.

    May 17, 2019 at 10:11 pm

    One to three years to reach maximum recovery. Maximum may be less than 100%.

    May 6, 2019 at 1:16 am

    I was on mycophenolate mofitel (Cellcept) for a couple of years. I was taking prednisone when I started, which was tapered down to zero in about a year. Eventually, the mm was tapered down as well and I have taken nothing for several years now. I had no adverse reaction to either drug.

    February 18, 2019 at 11:53 pm

    I’ve never heard of that being caused by GBS. The main thing is to monitor strength. A temporary weakness from an ordinary illness should not be confused with persistent weakness from nerve damage.

    February 18, 2019 at 11:41 pm

    The spinal fluid test mentioned by Jim is routine when GBS or CIDP are suspected. I wouldn’t say it is “definitive,” however. Sometimes the indication can be weak if the illness has not progressed enough. But a good positive is indicative of either GBS or CIDP.

    February 16, 2019 at 2:08 pm

    Negative tests do not completely rule it out, and clinical symptoms do not necessarily rule it in. Neuropathies are often difficult to diagnose.

    January 10, 2019 at 12:49 am

    If the neurologist doesn’t offer information about a test, there is nothing wrong with asking. A patient has the right to know such things. I wouldn’t go too far with it though. The neurologist is the presumed to be competent to interpret the result, but he or she should tell you if the level is normal, or high. Sometimes the test can be inconclusive.

    In my case, I just asked my neurologist if the test was consistent with the diagnosis (of GBS). It was and that was enough for me.

    January 6, 2019 at 11:01 pm

    The Centers for Disease Control and Prevention (CDC) have schedules of recommended vaccines which are available online.

    January 6, 2019 at 10:57 pm

    I don’t advise you to ask for particular prescriptions, but I do advise you to try to find a neurologist who has an open mind about the diagnosis and in whom you have confidence. When the neurologist rules out a diagnosis, he or she should be able to xplain why. It isn’t enough to just dismiss a possible diagnosis as unlikely.

    Have you had the spinal fluid test?

    January 6, 2019 at 10:51 pm

    Why do you think you might have been misdiagnosed? Was the spinal fluid test supportive of GBS?

    October 4, 2018 at 11:23 pm

    It is always a good idea to consume alcohol only moderately, if at all. When one is fighting CIDP or in recovery, one has no strength to spare. I did drink again when I got out of the hospital, but it didn’t help my recovery. I don’t think it actually hurt in a way directly related to CIDP, but its normal effect is contrary to what you need to be doing. I recommend being very conservative.

    September 28, 2018 at 1:34 am

    You need to get the spinal fluid test. If it is positive, that would be a good indication of CIDP. If it were negative or not conclusive, it still could be CIDP or something related. Neuropathies are sometimes difficult to classify. I was diagnosed as CIDP, but I am atypical. There is a lot of variation.

    September 5, 2018 at 11:14 pm

    I wouldn’t try to diagnose it, but GBS can vary from mild to severe.

    September 3, 2018 at 11:22 pm

    Bryan, you probably wouldn’t do both IvIg and plasma exchange at the same time. I had PE after not getting much help from IvIg and I believe it was the right treatment for me. I had a Quinton catheter in my groin for the PE and had nine exchanges over three weeks. Before getting it I was aprehensive, but I had no pain or complications from that procedure.

    I have had no relapse since my PE treatments more than seven years ago.