Well I am doing well so I descided to walk 15 to 20 minutes a day.
Last week I did 10 minutes 2 times a day.
So yesterday I walked outside for 15 minutes.
Today there is no way I could do the 15 today.My legs feel like I would fall.
oh well
just another day in MG land
Ann

I guess, it really is tough to say. I thought I had it figured out and have to keep starting at square one with exercise. Start slow and gradually increase, and rest if symptoms worsen. My neuro and I are going to discuss this again tomorrow, and I know what she will say, "No exercise until you are stable."

I feel like the odd ball amoung the rest of the MG population. I do heavy lifting 4 to 6 times a week in a gym. I do a cardio workout for 30 minutes 3 times a week. Yet I can not walk a half mile at a normal pace and still stand up. For me, life changed when I quit the meds and started exercising. I can definetly do more physical exertion with less fatigue with the exception of the walking. I also can not run very far which goes along with the walking. For me, I have noticed that the smaller supporting muscles fatique quicker that the bigger muscles.

Your muscles and receptors are not one and the same. The signal breaks down. As that signal improves, so will your muscles, stamina etc. As far as symptoms go, you will have to see what happens....I feel exercise is absolutely necessary towards our improvement. You should feel better for doing it. I would advise you to MAKE SURE you exercise when you are at your strongest, like peaking on mestinon, for example.

For me:

As I continue to improve, my exercise has increased. Whatever you do, just don't push yourself too hard. You won't know how much you can do until you try to come close to testing your limits. My limits have increased over time. I am now up to over 3 miles, non-stop(for well over an hour to hour and a half) currently(did it saturday and again Sunday last week). During the walking, I mix in a little nice jogging also(here and there and short distances), and I have no choice but to stop running and go back to a walk due to feeling less stable in the legs and breathing. Once my breathing is fine again and I collect myself, I could try another jogging set if I wanted, and have after a bit. It has been creekside also, so there are inclines and declines to climb up and down if I want to go off on side trails. As I said though, I cannot push myself too far though, or it is POSSIBLE I could get into trouble. Again, until you try to test your limits, you won't know what they are at any given time. You could get your neuros opinion also. I say take it little by little progression and go for it! I believe you will find you can do more than you think.

Keep us posted and good luck!

TJ

If you aren't walking and doing weights, just keep it simple and progress little by little. Start at low weight, then increase the reps, then increase the weight, and so on...

Hope that helps

One more thing,

It is a grey area here as to how it all ties together with the signal getting to the receptor for usage of muscle. I wanted to understand as much as possible myself, so I did a little looking and found this:

"receptors can undergo desensitization, a reversible reduction in response during sustained agonist application. Although the mechanism of desensitization remains incompletely understood"

http://www.ncbi.nlm.nih.gov/pubmed/15979501

Which uses a bunch of big words to say that it isn't understood why the signal breaks down to prevent usage of the muscles, only that it can or does.

Peace,

TJ

I have just started physical therapy ...which they are targeting my core...building strength....somedays are better than others...just listen to your body! so far so good...Also a medicine ball ( i almost forgot) If used correctly it gives u a intense workout while putting less stress on your muscles...just a tip that was given to me and boy do i love it!!!
Best wishes on ur physical fit journey,
Tab:)

For me its my upper body that feels the effects ,first , so l do not have good upper body strength.
yet l can walk quite a distance,and sometimes at pace.If l feel my legs become wobbly,l know things are not good for me.
At my best l exercise daily,but then l have days when l just can't do more than get myself through the day.
so when l can ldo ,when l can't l don't.
l cannot do a push up,l can lift a reasonable amount of weight,its like my arms just cannot function once in that position...l find it so frustrating that l seem to have these muscles that just won't allow certain movement/weight bearing exercise.

H iChristo! TJ hit it one the nose- excercise is good ( if you fairly stable) but take it slow and at your strongest times. if you overdo it on unstable muscles you can end up straining muscles and/or tendons and ligaments. my prednisone was increased last week so yesterday i took my dog for a walk and today my thighs are sore and have a little shin splint pain going probably walked too long (50mins). also having some breathing issues today. now i know to back off a little. next walk will be shorter. definetly listen to how your body responses to excercise and adjust accordingly--in small steps!! (now i have to practice what i preach!!lol)

I ran/walked a half marthon last summer. In training I would run for three minute,walk for one minute, it was just enough recovery to keep me going. I also started at short distances. Then...I wrecked a car, and MG spiraled. I am hoping to get back to running soon. Right now just doing beginner yoga. Good Luck

I walk on very hilly terrain, 6 miles, 3 times a week. I just added a weight regime to my workout to rebuild some muscle tone that prednisone stripped away. I have not had any problems with this routine. When I was at my worst, I did not have any problems with my legs or arms. Not sure if that matters. Good Luck!!! Obviously. exercise will help with your overall health!!!

Prior to MG, I worked out regularly. I tried to exercise since my diagnosis and been unsuccessful. My abilities, strength and endurance consistently decreased to the point where it became necessary to stop. I belong to a gym on the second floor and have difficulty walking up the stairs. So, my conclusion is that all of you exercising are in some form of remission. Am I missing something? Thus, my answer to Christo is exactly like MG is described. The more I do the less physically able I become.

Marvin,

Some for of remission? Not sure what to say about that, but we all have a different beast as far as symptoms go. There is a classification as to severity of this disease, starting with ocular MG only and moving down. Keep in mind also that some people may not even really have MG either. They just can't find a diagnosis that fits the symptoms any better. Subject to the treating doc of course.

FOR MG:

the Myasthenia Gravis Foundation of America Clinical Classification:

Class I: Any eye muscle weakness, possible ptosis, no other evidence of muscle weakness elsewhere
Class II: Eye muscle weakness of any severity, mild weakness of other muscles
Class IIa: Predominantly limb or axial muscles
Class IIb: Predominantly bulbar and/or respiratory muscles
Class III: Eye muscle weakness of any severity, moderate weakness of other muscles
Class IIIa: Predominantly limb or axial muscles
Class IIIb: Predominantly bulbar and/or respiratory muscles
Class IV: Eye muscle weakness of any severity, severe weakness of other muscles
Class IVa: Predominantly limb or axial muscles
Class IVb: Predominantly bulbar and/or respiratory muscles (Can also include feeding tube without intubation)
Class V: Intubation needed to maintain airway

TJ

Marvin, I want to be clear!! I WAS NOT exercising for about 10-11 months after I was initially diagnosed. It took almost a year for me to experience relief from symptoms. Now at 16 months after starting treatment, I feel great!! It was slow gradual improvement! I believe you have severe bulbar weakness like I had!! Hang in there, you will improve. MG is very slow to turn around.

Marvin -

According to TJ's list, I am IIb and IIIb (seems redundant to me since they are identical). My passions were riding a bicycle and hiking/climbing/backpacking. I build my own bikes and would ride 20-50 miles a day. I would backpack, climbing in the mountains of the northeast with a 60 pound pack on my back, 15 miles a day. I would spend a day in Manhattan and walk from 42nd St. on the east side up to 80th on the west, down to the towers on lower Broadway and back up to Grand Centreal - easily 8-10 miles. This is not ancient history.

MG changed all that.

Today, after 7 years with the disease, wrestling it to the ground, I have aged 7 years - am now almost 60 - and have been unable to maintain an exercise regimen to keep myself in the shape I'd like. I'm not fat but I'm not fit, either. I can't ride a bicycle anymore so I ride a motorcycle instead. I can't walk far, so I walk short distances. If I try to walk any distance at all - say 1/4 mile, my back and hips hurt.

You may be fortunate like all the others who recover to 90 percent of their pre-MG fitness within a year of their diagnosis. I'm not among that group. You play the hand you were dealt. As my neuro joked to the young resident during my last minute: "he'd have been dead if this had happened 20 years earlier."

For me, it's really about gratitude. I was hit with a very serious disease. It is now a survivable disease. I'm a survivor and, aside from my physical abilities, I function at 100 percent in all other areas of life. I have co-workers - one in particular who has been an inspiration to me - with MS. They, too, work hard to make sure they maximize their lives.

Whenever I start going down the path of thinking how much I want to be able to do that which I used to do, I always think of the alternatives. I also can still solve complex polynomial equations in my head and interpret multivariate simultaneous equation models. When that stuff goes, then it's time to throw in the towel!

Curt