Your Replies

  • GH
    March 4, 2012 at 3:05 am

    You are extremely fortunate to have had such a quick trip through the hospital. I believe your chances of a full recovery are good. I was in the hospital for 18 weeks. Much of that time, my leg and foot mobility was at zero, but I had therapists protecting my feet from developing contractures. When I got on my my feet again, I could barely reach neutral position to allow standing flatfooted. When I started walking with assistive devices, I had to compensate in my gait for foot drop. Today, 16 months into my recovery, I can walk without a cane and with a normal gait. I still carry a cane when I go out, because my knees are wobbly and my feet hurt, but I don’t use it much. Above the knees, I have been near normal for quite awhile.

    It takes time, but you will likely regain full arm and hand strength and coordination with regular exercize, I think.

    March 4, 2012 at 2:46 am

    The truth is that the incidence of GBS and CIDP is the same for people who have been vaccinated for influenza and those who have not. There are studies cited elsewhere on this forum which show that. That does not mean that a flu vaccine cannot trigger acquired neuropathies, but that persons who can acquire a neuropathy in that way are equally susceptible to acquiring it from the virus in the environment. The common factor is the susceptibility of the individual.

    It certainly isn’t necessary to have an immunization to develop CIDP. I have never had a flu shot (but not because I have any opposition to them), and I had no vaccines of any kind for several years before developing CIDP. My case was not caused by an immunization.

    March 4, 2012 at 2:33 am

    That’s terrific! I identify with whole routine — lying in the ICU unable to move anything below the next. Then struggling to get my arm strength back, then torso, then legs — the first tentative walks with a walker, then a cane.

    Now I still carry a cane when I go out, but am not dependent on it. Last month, for the first time, I could jump off the ground and not lose my balance, a year and a half out of the ICU.

    Congratulations on your recovery. Keep it up!

    March 4, 2012 at 2:07 am

    Chronic Fatigue Syndrome is a name given to chronic fatigue when no specific medical condition causing it has been diagnosed. Persons who have CIDP have chronic fatigue associated with it, but it is not called Chronic Fatigue Syndrome in that case. It is just an aspect of CIDP.

    March 4, 2012 at 1:54 am

    The interruption in service merely caused some to adjust their routines for awhile. I’ll be here, but I have more things than this taking my attention now.

    March 3, 2012 at 11:15 pm

    By the way, remember that the treatments, whether by IvIg or PE, are not aimed at improving your strength, but at halting the progress of the thing which is damaging your strength. When the attack on the nerves is stopped, the natural healing powers of the body restore them, to the extent possible.

    March 3, 2012 at 11:09 pm

    Lori, I’m sorry you are having so much difficulty finding the best treatment. Unfortunately, there is a lot of variability in how various cases respond to different treatments. I had IvIg, PE, Prednisone, and Mycophenolate Mofetil, the last which I am still on. The IvIg didn’t do anything for me except possibly stop the progression of weakness for a short time. It is not unusual to have to try various treatments to try to arrive at the best course.

    Five treatments of PE is typical, but I was fortunate to get nine. My opinion is that more is better, although one is never able to generalize from individual cases. I might have recovered with fewer.

    March 3, 2012 at 10:37 pm

    Lori, how many treatments did you have? I had nine. I did not notice any improvement until about the sixth. Since then, it has been all uphill, although healing from axonal damage takes a long time, and may never reach 100%.