spinal muscular atrophy / genic deases

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

This is a form of Muscular Dystrophy, right? I don't have SMA but I do have MD.

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

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.

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:)

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.

i am glad you where able to do things... also sorry to here you are getting weaker...as we said may be one day... hope is a good things to hang on to

Hope is always a good thing to hang on to.

Was not sure where to put this but here seemed right
My csma has now got to the cronic stage full stop
can no longer walk on stick in house i am on a frame and struggle to walk short distance
Went into hospital for 2 weeks had to have 24/hr care in 2015 and then twice last year all I seem to do is see different specialist
Am now on catheter full time inhaler full time and an infibulater also loads of new tablets
Must admit feeling depressed and sorry for myself
Can only tell members on this site about certain things not looking for smpathy just getting it all of my chest members here will understand as family and friends dont xx

I'm so sorry that your illness is becoming chronic, could the change in weather have anything to do with it? I'm using a walker now, my wonderful husband added a basket to it when I had my accident last March when my legs gave way and the fact I was carrying a glass caused my injuries to worse than could have been!! The basket is a god send!
I'm so sorry as well that your family are not being sympathetic or even helping you. To be honest my own Mother couldn't care less about me and it's only my husband and sister who are supportive from my family and my wonderful next door neighbour who is more of a Mother to me than my own Mother.

We are here if you need any emotional supportive and if I can help with finding any support or care closer to you or any questions answered just private message me or post on here.