[tysondouglass]

I guess the IVIG makes me strong enough to think I can run again. But wanna guess what happened when I stepped outside for a brisk 10 minute run? I can barely breath, very shallow breaths is all my body is allowing me to take.


I have a NIF here, and the highest i can get is a around a 30- usually 40.

It gets worse as I try to do it more and more. I have weezy exhales aswell as inhales. Im sure itll pass, i just thought I would be able to excersize, suppose not.

[AnnieB3]

Well, I guess denial reigns supreme.

You have to choose what you want in life. And stick to it. For whatever reason, your MG continues to not be stable. What you are doing still makes me think of Russian Roulette. If you want to stay in school, then just do that. I know it sucks not partying. What about partying once or twice a semester? What about using SOME exercise equipment in between semesters and be content to have walking around be the exercise during the semester.

I know you aren't stupid but boy are you stubborn. Are you Norwegian or something?

Annie

[brandonc]

I get where youre comin from dude. As far as I can tell we're about the same age and everytime I start feeling good I wanna go work out or something so I don't let it go to waste. Not being able to work out is a real bummer. I used to work out like 3-6 hrs a day and now...nothing. I know its hard.

[Annie59]

Personally I do have some success with getting cold. I best like a big giant gel pack from the freezer across my chest over my diaphragm and another across my back behind my lungs. I even had a neuro tell me to take a cold shower once when I called and said my breathing was worse. I dont know that this is like for you as some say sudden cold can make them worse or sudden heat. For me getting hot for any reason makes me worse and is what put me in hosp the first time. My hosp visits have all but one been in the July. I had them give me ice packs in the hosp and they were these great long cloth things filled with ice and they worked even better. If you can get the inserts for cooling vest or get one that goes around part od your body like neck and waist maybe you can run some. Cooling vest didnt work for me but I use the inserts as they stay cold longer and will buy someting other than the vest at some point. The vest I had only had front inserts and that didnt keep me cool enough. Steelevest doesnt make the best version I dont think.

Annie59

[scrubbs]

I guess I am confused about your condition.

Even though I feel fortunate that my condition has improved over the last few months, there is no way I could possibly take a 10 minute run. If I could run without falling, and I can't, I would be gasping for air within a minute or two.

The only exersize I can do is with rubber bands and along with stretches I can maintain flexable with good range of motion. I guess I could use free weights but I think that would be more stressful on my muscles.

Tony

[AnnieB3]

Tyson, I hope you are doing ok.

Tony, I dream about running and doing other things like biking. I can't do those in "real life" either.

[alice md]

Originally Posted by scrubbs

I guess I am confused about your condition.

Even though I feel fortunate that my condition has improved over the last few months, there is no way I could possibly take a 10 minute run. If I could run without falling, and I can't, I would be gasping for air within a minute or two.

The only exersize I can do is with rubber bands and along with stretches I can maintain flexable with good range of motion. I guess I could use free weights but I think that would be more stressful on my muscles.

Tony

myasthenia is fatigable muscle weakness, but it is most likely more then one illness. for some patients the part of muscle weakness is more pronounced and for others the fatigable is the main feature.

that is why, even though you both have myasthenia, for you it is impossible to run, and for tyson it is possible to run, but then become very ill after that.

on the surface it may appear that your condition is much worse then his, because he can run for 10 mintutes, and you would fall after 2 minutes.

but, in fact this is not exactly the case, because he has no warning signs, and you do. your body will not let you reach such a level of exauhstion, and his will.

it requires an enourmous amount of will power to stop long before your body makes you do it, because you know the conseqences of not doing so. and it is very tempting to try again and again, mostly if you think that there is a significant improvement in your condition. people around you encourage you to try and don't understand why you can't etc.

and yes, like you say it is very confusing for you and those around you, because you can rapidly go from being near-normal and being able to run, to a pre-crisis state.

alice

[scrubbs]

Good point Alice.

I guess MG treats us all differant. I'm not able to run 5 feet without falling.

If I could run for 1 or 2 minutes I would be gasping for air but I think I could ride a bike at very slow pace for a while. I might borrow a bike from a neighbor and try.

Tony