Your Replies

  • GH
    March 6, 2012 at 4:36 am

    Here’s the link:

    March 6, 2012 at 4:30 am

    I remember the stamina issue from my experience long ago. What works around a small town is not so practical on even a modest road trip. The bike I want now is about 400lbs. I expect I could right a bike of that weight. The effective weighr should be about half the actual weight, is that correct? I would hope to be able to ride it up the Oregon coast from the SF Bay Area, a pretty long trip on a bike.

    I’m pretty near normal now above the knees. Just a small tremor in my hands now and then, but no dexterity issues. My leg strength is pretty good, but my knees are wobbly. It doesn’t interfere with driving a car, and I wouldn’t think it would matter on a bike. With my feet, the main issues are pain and weak dorsiflexion. The pain is there pretty much all the time; it only gets worse when I have weight on my feet for a long time, so I don’t think that would be a hinderance. It doesn’t stop me from getting around now. Dorsiflexion is used to shift gears on a bike, but I’ve been told there are heel-and-toe operated levers to work around this. There’s nothing wrong with my head at all, unless you count wanting to get on a motorcycle in the first place!

    Tom, I feel like my balance is pretty near normal. Recently, for the first time, I discovered I could jump of the floor (not very far) and come down still standing. This is a year and a half into my recovery. A year ago I was barely walking with a cane, and my balance was challenged all the time. Balancing a bike would require a refresher course, and there is one of those offered near me. I have never tried the bike I’m thinking of (MG Nevada Classic), but if I couldn’t manage to stand over it and control it, I wouldn’t consider riding it, of course. I am 6′ and 200 lbs, by the way, trying to get back below 190. Question 3: Now because I am retired and have the time, and at (almost) 65 not much more time. A life-threatening illness that forces one into early retirement can change one’s view of what things are important, as I suppose many here know.

    It is not all certain I will do this. It’s just something I’m thinking about. We’ll see. Thanks, both of you, for the tips.

    March 5, 2012 at 5:27 pm

    I’ve thought about getting a motorcycle — probably a 750 — but I haven’t ridden in many years, and then on a smaller one. What are your criteria for deciding that you are ready, more specifically?

    March 5, 2012 at 2:59 am

    Lori, I felt nothing at all from any of my PE treatments. The procedure doesn’t do anything that causes a sensation, but only removes harmfull components from the blood that allow healing to take place and thereby strength to be regained. It was after about six treatments that I first noticed recovery in strength, in the ability to raise one finger independent of the others.

    My belief is that the relatively large number of treatments I received was important to my recovery, although I have no way to know this, of course.

    March 5, 2012 at 2:51 am

    That’s an excellent summary, Mark.

    March 5, 2012 at 1:46 am

    Lori, I cannot make any recommendations on your particular case, but can only suggest that you discuss all possible options with your doctor.

    In my case, I had no side effects from prednisone while taking it for about a year. I have no side effects from the Mycophenolate which I have been taking for more than a year at a constant dosage, except that it seems to take me a long time to get over colds.

    March 4, 2012 at 11:15 pm

    Lori, Mycophenolate Mofetil is one drug — an immunosuppressant. Its brand name is Cellcept. My protocol was to taper the prednisone to get off it in about a year. The MM was taken concurrently, but takes awhile to become effective, as I understand it. Now I only take MM — nothing else for CIDP.

    March 4, 2012 at 10:00 pm

    That’s a good idea. It may be that there are fewer such stories published merely because fewer are submitted, because, as you indicate, the inconclusive nature of the condition.

    I don’t mind second billing, however. CIDP could be better covered, but the incidence is lower than for GBS, and the condition less well understood, which explain lower coverage.

    March 4, 2012 at 7:47 pm

    Here is an excerpt from the CDC Guide to Vaccine Contraindications and Precautions regarding the inactivated influenza vaccine (TIV):

    “Note 13:  Whether influenza vaccination specifically might increase the risk for recurrence of GBS is not known; therefore, avoiding vaccinating persons who are not at high risk for severe influenza complications and who are known to have developed GBS within six weeks after a previous influenza vaccination is prudent.  Although data are limited, for the majority of persons who have a history of GBS and who are at high risk for severe complications from influenza, the established benefits of influenza vaccination justify yearly vaccination.”

    March 4, 2012 at 7:12 pm

    Here’s a link to the Medline Plus document on the subject:

    Rabies Vaccine

    March 4, 2012 at 6:56 pm

    Although GBS is associated with certain types of infections, “No one yet knows why Guillain-Barré strikes some people and not others or what sets the disease in motion.” (Quote from the National Institutes of Health.)

    Guillain-Barré Syndrome Information Page (from NIH)

    It is not possible to say with certainty what triggered any particular case of GBS. While there may be some possibility of a link, mere coincidence in time is not proof of it.

    March 4, 2012 at 6:39 pm

    Here is a link to the Contraindications and Precautions from the Centers for Disease Control and Prevention (CDC):

    Guide to Vaccine Contraindications and Precautions

    Prior GBS is not a contraindication for Zoster vaccine, although immune suppressants are.

    March 4, 2012 at 6:09 pm

    Drew, steroid dosage is generally tapered down over time, and a transition to long-term treatment is made. (In my case it is Mycophenolate Mofetil.) Do you have a long-term treatment plan to get off the steroids?

    March 4, 2012 at 6:03 pm

    I can’t identify with the feelings expresses in the original post at all. After a few months of hospitalization, a good part of it completely immobile below the neck, It was a joy just to sit up unassisted for the first time, and to make every step along the way to recovery, to whatever degree. Today, although I walk without braces or AFOs, I still have partial disability from the knees down from which I may never fully recover. My feet are in constant pain, more so the more I walk on them. It means nothing to me, because I can walk up the hill to the hospital and look at it from the outside, and go inside to encourage others who hope to walk again. Any day I go out, I am likely to see others with greater disabilities than myself. If I hobble around in pain the rest of my life, I consider myself a lucky man.

    Those who would put down the medical profession for having less than perfect knowledge of the workings of the human body, and for being unable to cure every disorder, should consider that before modern medicine about a third of GBS patients died of respiratory failure.

    March 4, 2012 at 3:25 am

    GBS and related acquired peripheral neuropathies have been around a lot longer than statin drugs. Guillain, Barré and Strohl described GBS in 1916. Statins were developed in the 1970s.

    Many people take statins. Some of those people are susceptible to GBS or CIDP and may develop the disorder. It is not helpful, in my opinion, to be looking for scapegoats. The way to recovery is through treatment, not blame, and that is where my attention is directed.