Your Replies

  • GH
    September 3, 2018 at 11:12 pm

    Glenn, it is more likely your case was triggered by your infection than by the shingles vaccine. No causative relation between GBS and the shongles vaccine has been established. Correlation in a few cases is not evidence of causation. People were getting GBS long before there was a shingles vaccine.

    As for the influenza vaccine, I had never had one in my life before developing CIDP. Now I get one every year.

    August 26, 2018 at 2:10 pm

    I don’t know about your neurologist, but mine (I had two) were professionals. They were motivated to get the best result they could because that’s what professionals do.

    August 17, 2018 at 1:43 am

    I took prednisone for about a year. The dosage was tapered down over that time. At the same time I was taking mycophenolate mofetil, an immune suppressant. The latter does not take effect immediately, which is why they are taken together. By the time the prednisone has been reduced to low doses, the mm will be established. After going off the prednisone I stayed on the initial dosage of mm for about a year, then started reducing the dosage on it as well. A year or so later I was off the mm and since have taken no drugs related to my neuropathy.

    I never had side effects from either drug.

    May 27, 2018 at 5:24 pm

    Earlier treatment generally leads to better recovery.

    May 27, 2018 at 5:21 pm

    GBS and CIDP are generally bilaterally symmetric.

    May 18, 2018 at 3:12 pm

    You should always be concerned abour a high fever, but it isn’t an aspect of GBS.

    May 1, 2018 at 9:02 am

    One lasma exchange treatment is not enough.

    April 21, 2018 at 6:52 pm

    In hospital I was on oxycodone for a time. I got off it as soon as I could because of the nasty side effects. I’ve never taken pain meds after that. As for loss of sleep, I’ve never worried much about that. In hospital I tried taking a sleeping pill once, but it didn’t seem to do anything. Then I tried a stronger dose with the same result. Then I quit. I’m not into sleep meds either.

    April 20, 2018 at 12:24 am

    I don’t understand why an ER doc would be doing a spinal tap. It isn’t an urgent emergency and it is best done with special equipment which would not normally in the emergency department. When I needed one I was sent to a unit where that was done under a fluoroscope.

    Your pattern is not typical. That is why your neurologist has doubts. It is important that she keep an open mind until the diagnosis is solid.

    April 19, 2018 at 3:04 pm

    First, it’s great to read that you are improving! But recovery can take up to three years and may never be complete. I had severe pain in my legs when I was in hospital, for which I took strong meds. When I started recovery I soon got off the pain meds, although I still had some pain symptoms which were not as severe as during the active phase. For a time at home I would still get occasional shooting pains in my lower legs, but over time they became less frequent. Now, several years out, I no longer have lower leg pain but I do have foot pain, which seems to be permanent. The severity varies with activity, however. At night it is more discomfort rather than pain.

    Keep in mind that less than a year is a short time for recovery from this disease. You should continue to improve over time, although the rate of change will slow. There is a good chance that your pain will lessen to a tolerable level over time. In my case, although I have some residual pain, I take nothing for it. It is better to live with mild pain than to take pain meds, in my opinion.

    Best wishes for further improvement!


    April 12, 2018 at 10:22 pm

    Did the plasma exchange seem to work better than the IvIg? Stick with what works best. When IvIg seemed to be ineffective for me, I was switched to PE and never took IvIg again. Five days of steroids is nothing. When I started recovering after PE, I was given prednisone with dosage gradually reduced over the course of a year. At the same time, I took mycophenolate mofetil which I continued for about three years.

    After a serious case of this, it would not be unusual to have permanent residuals, especially in the feet. The thing is to try to stop the active phase. If that can be done, maximum recovery will take about three years, and it likely will not be 100%. We just take it one day at a time and try to do the best we can in our new circumstances.

    March 30, 2018 at 3:00 am

    I had a second loading dose of IvIg after backsliding a week or so after the first treatment. The second didn’t help much either, so when I continued to decline I was switched to plasma exchange as my primary treatment.

    Your recovery cannot be predicted accurately. Just try to find the treatment that works best for you and hope for a good recovery.

    March 30, 2018 at 2:38 am

    I agree with B. The NCV/EMG tests were not pleasant, but just a matter of discomfort. I had complete confidence in my neurologists, so I did not object to either test. It may be that the insurance co. wanted them as well as the neurologists.

    The EMG indicated that I had some axonal damage in my legs. I was glad to know that so as better to understand my condition.

    March 28, 2018 at 2:08 am

    That’s good. It is normal to taper down over a period of a year so. When I used them I was also taking Mycophenolate Mofetil, which I took for about three years.

    March 20, 2018 at 12:56 am

    Stem cell treatment is still in clinical trials as far as I know, and it is not available to everyone.