Alice, I have a question and perhaps you can help me out. 6 weeks ago I ran a half marathon. My time was off but I figured it was because I had done another half just 2 weeks earlier. 4 weeks go I was still running but noticed I was tiring quickly. 2 weeks ago I was diagnosed with MG and it was effecting vision, hands, arms and legs. I was sent the next day to begin a series of 5 plasmapheresis treatments which are now done. I am taking 80mg of prednisone every other day and my vision while much better is still suspect when riding in a vehicle.

My question is when I feel up to it should I try some form of light exercise a brisk walk perhaps? Or am I better just laying low for the next 3 weeks until I see my neurologist again? I do find a brisk walk tires me and I get out of breath. What would be better in the long run for recovery?

I was supposed to be doing another half marathon next weekend but instead I am going with friends to cheer them on. Life has changed for me in the blink of an eye and I have so much to learn.

Roger

So glad to find these postings and particularly the thread with the runners. My son was on his high school track and cross country team. Cross country season went fine but near the end of track season, I noticed his gait was off. There was no pain and his time was ok, so I thought he had changed his stride and trying to increase performance.

At a meet in April he ended the race in pain. Pain lasted about 3 days. He had a waddling gait ( that lasted about 3 weeks) and muscle weakness (that is still going on 6 months later)

It has now been 6 months and struggling to get a diagnois. 5 doctors, 4 MRIs, 2 EMGs, and countless labs. Been to Vanderbilt hospital (Nashville TN) twice. Finally got to Dr Collins at Cincinnati Childrens who was the first one to tell us what he thought it MIGHT be. Labs have been sent to Mayo clinic to check for MG / LEMS.

my question is - how long does it take to test for these diseases and is there something I can be doing to help. Its been very frustrating to this point.

Six months is not unusual. What I would suggest that you can do is that you try to understand that you son can't do what he wants to do. If he has a neuromuscular junction dysfunction, he is not being lazy. The hardest thing with MG to me is that people want to force me to "just get over it" and quit being slow, lazy, etc.

Boonerunner, From all I have read this disease effects everyone very differently. I have read success stories of a man coming back and doing an Ironman Triathlon after spending a year or more wanting to sleep 17 hours a day. I think the biggest thing I have learned is I have to be patient. I expected 5 plasmapheresis treatments would fix me up good as new and as much as I want to deny it I may not ever get back to the running I once did. That said I am and always will be to stubborn to give up trying. I hope your son is just as stubborn and finds his way through this.

Roger

I have not been exercising much since April. CBC was normal in May, abnormal in Septempter.

I tried a little short jog last night and once again met with the breathing issues where it felt like I was gasping for air. So I slowed it down and got in a nice brisk 3 mile walk. I felt great last night but this morning I am feeling a bit weaker especially in my hands. Not sure the two are related but I am assuming they are. Had the CT scan yesterday as well and waiting on the results from that. I am also wondering if some of the weakness is a side effect from the dyes used.

I am going to try and keep a regular walking schedule until I feel good enough to get back running.

I had a repeated CBC done 2 weeks ago when I saw the neurologist. I dont think she was going to re-order but I specifically asked for it. My result came today and the WBC and Neutrophils were elevated slight more than 1 month prior. I will be calling tomorrow but I am a bit freaked out because I have no signs of infection. I am waiting to get scheduled for a CT to r/o Thyoma. I am negative for antibodies and awaiting MuSk results. I just wish there was a clear answer to what is going on in my body!

Lesmom, I think you need to get a referral to a hematologist. A high white blood cell count, especially going higher, is nothing to ignore. Please see an expert about this!

Hi Roger,

Sorry I just saw what you wrote now.

I don't know if my answer is still relevant, but I think you should always do a little less than you think you can.

Initially, you will probably err on doing more, not less. Because, in the early days of MG it is hard to comprehend how much less we can do. (at least this was so for me). You think you have done nothing, when you have already exceeded your limits.

In my opinion, any sign of weakness following exercise (which can be up to 48 hours) should lead to a slight decrease in the exercise level.

Once you find the optimal level and you are stable for a few months, you can gradually increase it, in very small steps.

Also, make sure that you have proper nutrition before and after your exercise (this is true for everyone, not only MG patients).

Hi Lesmom,

I agree with Annie that your elevated white count should be evaluated properly. Most neurologists wouldn't know much about it, just like most hematologists wouldn't know much about MG.