Your Replies

  • GH
    March 30, 2012 at 4:00 pm

    My neurologist is Dr. Eric Collins, who has an office in Oakland near Summit Hospital. He is experienced with CIDP, and teaches neurology.

    March 30, 2012 at 1:35 am

    OK, but that’s news to me. I haven’t read of any connection. Here’s a link to a document from the National Diabetes Information Clearinghouse which does not include GBS as one of the factors:

    I wonder if a link, if one exists, is due merely to people with GBS becoming less active.

    March 29, 2012 at 7:22 pm

    Your condition cannot be diagnosed in a forum — you need to see your primary doctor and whatever specialists are necessary. That being said, I don’t see how IvIg could have anything to do with it.

    March 29, 2012 at 6:20 pm

    Who are “they” and what is the basis for their thinking that there is a connection?

    March 27, 2012 at 3:44 pm

    IVIG HCA Pharmacy Protocol:

    from the American Society of Health System Pharmacists.

    March 17, 2012 at 5:41 am

    Here is a link to the American Academy of Neurology article on the study for which Yuehan has linked to an abstract, above:

    “Statins and risk of polyneuropathy”

    March 14, 2012 at 1:32 am

    emitch, my experience was similar to yours in some important respects. I, too, was first diagnosed with GBS, but this was changed to CIDP. This is not unusual for cases with initial presentation similar to GBS. I, too, was moved to rehab while my condition was still deteriorating, which caused some problems with therapists who did not understand the disease and its stages. Fortunately, for me, this stage was short-lived. I don’t think anyone hated me (not many, anyway). I had my daughter as my advocate, armed with a copy of Parry and Steinberg, and an excellent neurologist who set the therapists on the right path. Then the situation was resolved when I went back in the acute hospital with pneumonia and completely crashed, making the futility of rehab apparent to all. Then came plasma exchange, and the beginning of recovery. Once I could feel my motor function returning, I started giving rehab therapy everything I could muster, and recovery of upper body strength was rapid. Recovery of lower limbs was much slower, yet fast enough to satisfy everyone. Just last week, after about a year and a half of recovery, I started going out without my cane. (I haven’t been using it indoors for months.)

    It is true that medical people of all sorts love to see people recover, especially from serious illnesses.

    Your experience is also consistent with my view that, at least for CIDP patients who crash, the more plasma exchange treatments, the better (I had nine).

    March 11, 2012 at 1:03 am

    That’s a terrific story of recovery! I lost 40 lbs just wasting away in the hospital, and thought that was something. Now the problem is just to get rid of the ten I put back on. After more than a year of recovery, I’m in pretty good shape, but I can’t imagine playing baseball. The legs just aren’t up to it.

    Are taking any drugs for maintenance?

    March 10, 2012 at 4:59 am

    Lori, the only treatment which can be said to “reboot” the immune system is the stem cell treatment which is in clinical trials. Much has been written about it in this forum.

    March 9, 2012 at 3:50 pm

    The only things I don’t like about the new site so far are:

    I haven’t been able to find the archive of newsletter articles.
    The rapidly changing image on the home page is annoying.
    The contrast is too low for comfortable viewing.

    Otherwise, I like the more professional look and feel of the site. The software package used previously looked amateurish by comparison. The site ought to look like its purpose is serious, which it is.

    People whose primary interest is social networking should be using social networking sites, in my opinion.

    March 9, 2012 at 5:04 am

    OK. I have trouble shaking off an infection, also.

    Gabapentin has a long list of possible side effects:

    I would review these and discuss with doctor.

    March 9, 2012 at 1:42 am

    Medicine is by nature conservative, because of the potential for harm. I prefer a conservative approach, myself. I don’t how the decision is arrived at to use immune suppressant drugs. In my case, I have not been on IvIg since the early treatments which didn’t help much. That may have figured into it.

    March 9, 2012 at 12:23 am

    Antibiotics do not help cure colds or other viral infections. You should not take antibiotics unless prescribed by a physician for a particular condition. There is no established link between antibiotics and GBS.

    March 8, 2012 at 1:12 am

    My understanding and experience are that treatment of CIDP generally involves a bit of trial and error.

    March 6, 2012 at 4:52 am

    It is important to know the extent of axonal damage. Demyelination heals relatively quickly and completely. Axonal damage takes much longer to heal, and may not recover 100%. Not that you can do anything about it, but I think it is helpful to understand what has happened and what to expect. I have axonal damage in my legs, and my foot drop has been very slow to correct, but it is pretty good now. There is a good chance your foot drop will correct, but understand that it may take awhile.