Hi, Oceanside. The thing to remember about MG symptoms is that they don't have anything to do with muscle deconditioning but with neurotransmission. While it's helpful for us to be as strong as we can be so that we can be as well as possible when our medications are working, having strong muscles isn't going to solve the problem.

I was at a physical therapist a couple of months ago for my swallowing difficulty. She helped me with "technique," as it were, which includes things like head positioning and aspiration precautions. However, she told me in no uncertain terms that exercising MG-weakened muscles is strictly contraindicated and would make me worse, not better.

That's not to say to avoid exercise in general, but we have to be very careful about how, when, and how much, which is such an individual thing.

I feel super crappy if I don't exercise, but I feel super crappy if I exercise too much. There is at least one ongoing study to watch:

http://clinicaltrials.gov/ct2/show/NCT01047761

Exercise geared at the appropriate level would be beneficial, in my opinion, if you have current ability.

Seatlle I'm wonder ifthis is a 'chicken before the egg scenario' MG is a muscle end plate neuro transmitter disease. Baasicall the musces do not respns to commands as they should. I would think that over time this poor transmission and inherent weakness would lead muscle deconditioning, especially the more chronically affected muscle groups.

I had a talk about muscle strentgth and my back issues and the general consensus was that weaker muscles and muscle groups whether through MG being active or just deconditioing would could very well lead to joints that poorly supported (mechanically), which of course could lead to osteoarthritis and simply joint pain. The secondary effect could also be that ligaments, tendons and unaffected muscles now would be asked to exert themselves in an abnormal fashion.

Joe Funk

Joe, that doesn't seem to be the case based on the resources I've read. I'll see if I can re-find links later on and share (why aren't I saving links as I find them? I should be better about this!).

According to the PT I saw, we certainly could strengthen my muscles through PT exercises, but she was adamant that it would be worse for me in the long run.

Seatttle I really am foggy....sorry I'm just at the infusion center starting IVIG and the IV Benadryl is fogging up the brain box.

My response was more along the lines of what would be the affects of weakened muscles on joints and other supporting elements and how this is a byproduct of MG.

You are correct on the value of exercise and the cautious nature of how much can be tolerated, there seems to be fine line or tipping point at which exercises becomes detrimental and this is governed y the level of disease activity.

I had to stop curtail and stop some of the exercises for my lumbar stenosis and osteoarthritis for this reason.

Exercise is such an individual thing. Once going to the mailbox was a major accomplishment and the most I could do. If I did more my MG symptoms would get worse.
Today( 3 years later) I swim.
In the beginning of my desease I had home PT. They did give me good ideas as far as mobility issues so that helped. What may PTs don't get is repetitive motions bring on our symptoms.
The PT had me doing lung exercises to strengthen my lungs. That was a mistake. It made me worse. I find meeting with anyone always can give new ideas.
Do you still have that pain in your back? Would a message help?
As you see we have to be right on involved in our health and we can keep more sane if we don't keep track of the people who have made us worse instead of better. Haha I have list which I try to forget because I really don't think those docs meant to hurt me.

ah, I see now, Joe! I think I was misreading you initially. I'm not at my all-time sharpest today. :)

I agree with Ann "Exercise is such an individual thing."
I found out that almost any attempt at exercise is very bad for me and knocks me down for days or even weeks.
Just be careful, start very slow to see what works for you.

Jerry Mc

As a therapist with MG I have my own take on this. I agree with Elenora. Exercise is a mixed blessing. We must get just enough to avoid debilitation. Some of our muscles are not as affected from MG. We can get imbalances in muscle groups also. Repetition can be the problem. I try to build in my exercise in smaller chunks. I have been doing some research reviewing with other therapists looking at different protocols for those of us with Neuromuscular disorders.New studies are showing benefits for MG, MD and other disorders. I just went to a workshop on this recently. Alas my notes are still at the main office. We brought in an speaker on new techniques for neuromuscular disorders because we are getting so many new cases. The old thinking was no, and that is how many therapist were trained. The new thought is yes. But it must be done differently.I don't have the new protocals memorized yet. I would seek out a therapist who works at an MDA clinic for treatment or referral in your area. Also like Joe says I also injure myself when I am weakerbans sometime just increasing my medication for more muscle support and allowing them to recover fixes the problem. Therapy must come from a different approach and mind set then many therapists are taught. You have to avoid what we call the shake and bake clinics.

I had extreme upper back and neck pain before I was diagnosed and thought it was caused by a rearend collision that I had been recently involved in. I went to a chiropractor several times and actually got a lot better, but the pain soon returned. I just learned to endure it and didn't think anymore of it. When I got diagnosed and treatment, mainly mestinon and plasmapheresis the neck and back pain disappeared, but does return when I am need of treatment again.

I know that repetitive motion in my case only makes me weaker with each exertion. I went to the speech therapist for swallowing and she cautiously had me do mouth and tongue and swallowing exercises. These brought increased symptoms with each repetition. If I did too many my mouth would sag and my speech became impaired. So in my case therapy did not benefit me, but I do plan to have some PT if I can get more stable than I am right now.

Thanks everyone for sharing their experiences and views. I think this is a really important topic. Mgot, look forward to hearing more about the new PT protocols you learned, when you're able to access your notes. :)