Myotubular Myopathy - Neuromuscular Diseases Message Board

Madalot · 04-24-2003, 06:04 PM

I am a 40+ year female recently diagnosed with myotubular myopathy. I have general muscle weakness everywhere and have severe difficulty navigating stairs. My balance is way off and doing regular things can be exhausting. My doctor said I was probably born with this, but it was mild enough when I was younger that it went unnoticed. Now that I'm older, the disease is progressing.

Is there anyone out there familiar with this that might be able to offer some advice on coping with this?

Any help would be greatly appreciated.

Lucille711 · 06-22-2003, 09:17 AM

Do you have any muscle "thickening" or "hardening"?

Lucille711 · 06-22-2003, 09:33 AM

Do your muscles appear to be "thickening" or "hardening"?

Madalot · 06-22-2003, 01:28 PM

My doctor has never mentioned "hardening" or anything like that. My muscles have definitely atrophied.

faewyn · 07-17-2003, 07:47 AM

Hi there,

I am Jess from the yahoo MTM group, havent introduced myself to you yet..

I was hoping to ask you a question about something you mentioned in one of your posts regarding enlarged calfs, as i have been diagnosed as being a carrier for my sons mutation and i have enlarged calfs and always have.. I dont think i am a manifesting carrier although i have been one to be tired all my life and i am easily tired after exercise and always have been. I was a little worried when you mentioned about the calfs as i have been aware of my calfs for many years now.. i am 25 years old..

Jess

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Jess
Mum to Jack,(10 months) X-Linked Myotubular Myotubular Myopathy, Tracheostomy, G-Tube, CPAP @ night, Still in Hospital