Your Replies

  • GH
    March 20, 2018 at 12:54 am

    You haven’t given much information here. Neurologists treat medical problems involving the nerves, so of course they do nerve tests. The simplest, done by family doctors as well, is to test reflexes by striking with a special hammer. There are also electric tests: Nerve Conduction Velocity and the EMG (I forget what that stands for). They can also just stick you with a pin to see how you feel it.

    Medicine is not nearly as “barbaric” as it was a couple of hundred years ago. If you have any kind of medical problem you should be thankful for modern medicine. If you have a neurological problem you need a neurologist.

    March 16, 2018 at 9:54 am

    It’s normal to become exhausted easily, so one must be careful to avoid overwork while still getting regular e ercise. There should not be persistant loss of strength.

    Do you have small weights which you could use to exercise your arms? I was using three pound weights early in my recovery for daily arm exercises.

    March 16, 2018 at 1:17 am

    johnc, the dosage of prednisone is usually tapered down over time. I took it for about a year, but at the end the dosage was very small. During that time I was also taking mycophenolate mofetil. That drug takes awhile to take effect, which is why I was taking both at once. I continued the mycophenolate for two to three years after going off prednisone, reducing the dosage every six months.

    March 14, 2018 at 2:23 pm

    Neuropathies are difficult to diagnose. Stick with the neurologist who wants to do a more thorough test, and keep a close watch on your strength. CIDP will manifest itself as a loss of strength, usually from the lower extremeties upward. B12 won’t hurt anything and may help.

    My advice is to stay away from “integrative” medicine. This just the latest quack buzzword. It is about integrating quackery with medicine. Quacks used to call it “alternative” medicine, then “complementary,” but they have become more adept at infiltrating the medical profession by adopting new vocabulary which sounds more legitimate.

    March 13, 2018 at 2:36 am

    I don’t know why you would think there was a causal relation. There is statistical variation in every medical condition. You couldn’t separate normal variation from variation due to GBS from a single case. A larger cohort would be required, but the population which meet the criteria is quite small.

    My thoughts are to just do the best you can to recover and don’t worry about unprovable hypotheses.

    March 2, 2018 at 1:53 pm

    Yes, generally, earlier treatment leads to better recovery.

    February 28, 2018 at 11:08 pm

    Both GBS and CIDP can be treated with IvIg and plasmapheresis. I had both. I started on IvIg before the diagnosis was firm, because it is usually good treatment in either case. What was your diagnosis at the outset that you were not given IvIg?

    February 28, 2018 at 11:04 pm

    Terry, while there are not a lot of regular contributers here, the site is more substantive since the people who more interested in social networking went over to Facebook.

    February 28, 2018 at 11:02 pm

    I know I have CIDP because my neurologist calls it that. To be more precise, initially there was some question, because I am atypical under either diagnosis. When I asked my neurologist if he had decided it was CIDP, he said “that’s what we are treating you for.” The significance to naming the disorder is that the treatment plan and expectations for the progress will differ between the two. But there is a lot of variation in how these disorders present. What matters is getting the most effective treatment for whatever you have. In my case, things worked out fairly well, even though I am atypical. I don’t care what they call it.

    February 28, 2018 at 3:25 pm
    February 20, 2018 at 11:49 am

    From God?

    February 20, 2018 at 11:47 am

    As safe as always. If you need a tooth extracted, you have to do it.

    February 19, 2018 at 5:32 pm

    For example, weakness generally starts in the feet and legs. Holding onto the back of a chair for balance, can you raise yourself on the balls of your feet? Can you do it with each foot separately? This is a test the neurologist will do to see if your strength is increasing or declining and which anyone can do on his own. Just pay attention to how high you can lift each day.

    February 19, 2018 at 12:46 am

    The tapering of the Prednisone does seem rapid to me, as I took it for about a year, as I recall. But treatment for CIDP must be individualized, as there is a lot of variation in cases and in how individuals respond to various treatments. Some people have trouble with Prednisone, but it never bothered me. As the Prednisone was tapered down, I was put on My ophenolate Mofetil, which I took for two or three years (I forget, exactly).

    It is common for symptoms to persist in the feet. My case is not active, but I have permanent residuals in my feet. At home I seldom wear shoes or socks for that reason. When I am out, I can walk normally but the more I walk the more my feet hurt. I just live with it.

    February 19, 2018 at 12:35 am

    Welcome to the forum! It appears you have some unique experiences to bring to the discussion.