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Adult Distal SMA |
I was diagnosed last year with Distal SMA at the age of 44.
Although the diagnosis came as a shock, it seems that I'm relatively 'lucky' if I can put it like that. My symptoms at the moment are primarily a weakness in the lower legs and feet, which doesn't stop me walking, but does make walking difficult and tiring. My ankles are pretty weak and floppy.
My Consultant and GP both think I've had this for many years, but that the deterioration in my muscles has only recently got bad enough for it to start causing me a problem. As regards a prognosis, their best guess is that the progression will continue to be very slow, but it is just a guess.
I'd be really interested to hear from anyone else with Distal SMA. It seems that no two cases are exactly alike, but I'd appreciate hearing about how others have found ways of coming to terms with the condition, both from a practical point of view and also mentally. |
| Posted: Wed Feb 13, 2008 10:45 pm |
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3 Replies |
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Re: Adult Distal SMA |
Hi,
You can call me on 07808120364 - i was diagnosed last yr!
Naresh |
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Re: Adult Distal SMA |
Hi
I was diagnosed with Distal SMA at the age of 16 years (now 33yrs). I have weakness in my legs and hands. I can walk around unaided but do get tired and find stairs difficult. I had very floppy ankles and used to fall over most days. Many years ago I had a triple arthrodesis (surgery) on both ankles. This is a fusion of the ankle bones. It stabilises the ankle but that also means you lose some movement in the ankle. I don't mind this as the surgery has improved my quality of life and I don't fall over as much as I used to. Surgery is not for everyone, but worth exploring.
Do let me know if you want more info about this.
Dee |
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| Sun Aug 17, 2008 11:35 pm |
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Re: Adult Distal SMA |
| hey my names claire i am 32yrs i found out i have distal sma 2 month ago i been in a lot of pain for the last 15 yrs and just gone t find out wat it is causing it wish i went sooner im haveing problems falling over my legs are week and i have a brace on my ankle and foot i am getting suplyed with shoes soon and have an appointment at human genetics center for life has any 1 been there cos i am kanny nervus i no it will b ok just i av t take my daughter |
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