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Old 08-16-2012, 01:34 PM
StephC StephC is offline
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Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
StephC StephC is offline
Member
 
Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
Default Thanks for your honesty

Quote:
Originally Posted by scrubbs View Post
With treatment most people can lead a "relatively normal life". You read this statement on numerous websites about MG and I, for one, do not believe it unless you go into remission.

My opinion and experience. Prior to acquiring this disease, your muscles are strong.
Initially, you will have fluctuating weakness in your voluntary muscles and you can have times when you may be able to do normal things, not often, like you have no illness at all. At these times, you will still fatigue faster and require rest sooner because your strength just expires. Before you became ill, you could do a lot more and not feel as bad.

I think we can stay flexible by stretching but, because we do not have the ability to build muscle strength through exercise, the muscles just keep getting weaker.

With treatment or for some other reason you may become stabilized. I am considered "stabilized".

Now, at rest, I feel almost normal but, because I am still not able to build up my muscles, I notice any activities including walking causes my muscles to fatigue at a much faster rate which requires rest much sooner and I believe that even though my disease may not be getting worse, my muscles are still getting weaker and they will continue to get weaker.

So as time goes by, my not so "relatively normal life", my life will become much more less "relatively normal".

Even sitting on the floor playing with my dog causes exhaustion.

Scrubs
I can relate to almost all you say, I have 3 dogs and they can't understand why no more 1-2 mile walks twice per day.

.of course we can all hope for remission but I don't understand that at all (how, why, when, how long, etc) but it seems to me even if you do go into remission it is always possible at any time to come back so to me seems like it is better to be realistic instead of waiting for my normal to return? Also all the with treatment patients can lead relatively normal life statements online make newly diagnosed patients/family/friends expect I take some rx and all is better.

I prefer to figure out how to make best Out of the situation But that is not possible unless I know what situation is.

Thanks again, be well and take care.
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