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spinal muscular atrophy / genic deases

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16 years 2 weeks ago #2182 by ducky
i seem to have a rare form of SMA.Have childhood symptoms, and later stage of it, but jumped between age groups got it age 26..Also by passed some of symptoms,Seem to have diffrent strains as well.Medical profession baffled,no history in family of genics . Have a lot in common with ms,mythis gravitise .and some others. would like to here from people with same sort of proplems. I feel as if only one on planet with this ;)

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15 years 9 months ago #3847 by Michelle
This is a form of Muscular Dystrophy, right? I don't have SMA but I do have MD.

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15 years 9 months ago #3881 by ducky
Michelle.. I looked up MD and I have some of the symtoms...legs affected first..diffficalty in walking.. falling..getting up an down in chairs and stairs also lifting things ..it has been gettng worse as I have got older so it might be a rare form of MD ..the medical profesion have said that even if they keep giving me byopses it would not be any help to me as I dont have a genetic.history to help them pin what it truly is.. I am intressed in the symtoms you have... thank you for making me feel that i am not alone

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15 years 9 months ago #3892 by Michelle
Well, I was born with MD so I’ve had years dealing with this. I have considerable weakness. All my basic needs are done by my parents and nurse. I can feed myself and brush my teeth as long as it’s easy to reach, but for the most part I’m completely dependent on others. If you have any other questions don’t hesitate to ask.

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15 years 9 months ago #4005 by ducky
thank you for the information..you have answered a question I have often asked myself.. whatever the name of my disablity...I was able to do a lot of things in my life before and after... I hope with all my heart that they will find a cure in the future for all typs of disalitys and illnesses...and will continue to count myself lucky...regards to you ducky:)

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15 years 9 months ago #4062 by Michelle
I was able to do a lot when I was younger. As I got older I got weaker and weaker. I also hope there's a cure or at least some kind of treatment.

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