What can I do?

    • Anonymous
      August 14, 2006 at 7:21 pm

      I am an occupational therapist in a LTAC. I just evaluated a man today with Miller Fisher GBS. I know there has to be something I can do to facilitate faster return of his facial/occulomotor muscles, but I can’t seem to find anything, yet. I know how persistant I am so I am not giving up, for sure! I was just wondering if anyone knows if Neuro-Muscular stimulation is helpful and or Active-Assissted Range of Motion. I knwo someone knows something and I would appreciate the nudge in the right direction.


    • Anonymous
      August 21, 2006 at 6:12 am

      DeAnne, I admire your persistence, something we all look for in our therapists. Unfortunately you cannot make a muscle work if the nerve supply to it is damaged as in GBS and MF variant.
      Fortunately those with MF variant usually make a quicker recovery than GBS alone. Fatigue temporarily increases weakness so plenty of rest is most important.
      We all look for something that speeds recovery and many here have tried all sorts of therapies. All that can be done from a medical point of view is to inhibit further deterioration. Repair to the myelin sheath takes time and our body’s own repair kit does this. DocDavid (CIDP)

    • Anonymous
      August 21, 2006 at 9:52 am

      I had Miller-Fisher. For me, Hope was the kicker. Let your patients know that the odds are way in their favor that they will recover and that the chances of relapse are slim. Statistics support this.

      Therapists used electrical stimulation on my face but I do not know what value it had. For stimulation, I used a frozen bag of peas, 15 minutes each side several times a day. I used a tool that was designed to pry the mouth open a little at a time but I found it to be useless. From my experience I believe it just has to take its course. I do know that after I could see and was able to care for myself, progress accelerated.

    • Anonymous
      August 21, 2006 at 12:50 pm

      DeAnne —

      My knowledge comes mainly from my own experience with MF starting a couple years ago. The unfortunate conclusion I have come to is that there isn’t a lot you can do to speed your patient’s recovery. As DavidBod has said earlier, our organs simply aren’t going to work until the plumbing and wiring that makes them work is restored, and it’s up to our own bodies to do that. And even though this tends to happen quicker in MFers than in straight GBSers, it still takes a frustratingly long time.

      That’s not to say, though, that you can’t give your patient the gift of helping him find temporary work-around techniques that will enable him to function despite his limitations. If he has kaleidoscopic vision, help him learn to function with an eye patch for a while. That doesn’t cure his visual disability one bit, but it should reduce the multiple vision to single vision. If he can’t speak because his lips, tongue and cheeks don’t work, help him to experiment with using his hands to apply pressure around the outside of his mouth to simulate the the actions that his mouth can’t do on its own. Maybe he can do the same thing around his eyes to help them focus. If he can’t drink from a glass because his mouth can’t close on it, help him find a drinking vessel of a size and shape that will enable him to gently pour liquids into his mouth and avoid gagging and choking. There are lots of short-term fixes that can make day-to-day life tolerable for MFers. Being able to do these things will make him feel immensely better, even if they aren’t a true recovery. Just make sure he understands that true recovery is indeed on the way. And above all, he should never feel embarrassed to do any of these things anywhere and in front of anybody. After all, he’ll be taking back control of his life.

      MFers frequently don’t have the burden of torso and lower-body pain and paralysis that is so devastaing to straight GBSers. We’re usually somewhat ambulatory and often feel fine from the shoulders down. But the disease hits us so acutely in organs/functions that are so central to us and our personalities that it’s easy to get discouraged nonetheless. If we can develop the little tricks of the trade that get us through the day and let us feel like we’re not allowing this thing beat us, that’s about all we can do, but in my case it was enough.