Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

 
 
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Old 03-30-2010, 06:52 PM #5
rezmommy rezmommy is offline
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Join Date: Nov 2008
Location: Ontario, Canada
Posts: 189
15 yr Member
rezmommy rezmommy is offline
Member
 
Join Date: Nov 2008
Location: Ontario, Canada
Posts: 189
15 yr Member
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Tyson,
I have read many of your posts but have not responded to any. I would like you to know that I am older than you (38) and haven't been diagnosed that long (since Nov. 08) but I have learned one thing about MG.

What I have learned is that you have to know your body and your limits. Not what you were like before having this disease. Even with the best treatment plan in place, I don't think that any of us completely get back 100% to the person we were before diagnosis.
I remember when I was first diagnosed and knew nothing about this disease, some very wise people told me that I have to know my limits. It was not until months later that I fully accepted and understood this advice.

Prior to getting MG (my symptoms actually started in Aug. 07) I was Super Mom. I left the career world when I had my first child at 28. I did everything to make a great home for my husband, children and extended family. I volunteered at the school. Hosted every family get together. You get the picture.

Well when I started to get so weak that I couldn't carry my children or wash my own hair, I had a very difficult time. When I was finally diagnosed I thought that I would take the meds and carry on. Myasthenia Gravis does not work this way. I started on the meds and I was able to get out of bed and do things with my family again. Overdoing it (ie. washing windows, carrying things up and down stairs etc.) was something that eventually caught up to me and I have been in hospital for breathing/swallowing difficulties because of it.

I do lead a really good life now. I take my meds and go to the hospital for monthly IVIG treatments. I do not push myself to the point of surpassing my limits to get back to being Super Mom again, it's just not worth it.

I know that you are a bright young man who is on the brim of everything but please realize your limits. You can feel good and have a very satisfying life it will just go in a little different direction than you previously thought.

Tyson I'm not telling you to drag the rocking chair out but please realize your limits with MG. Take care ~ Melanie
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