Multisystem Atrophy

[livingwith]

I have just been diagnosed with multy system atrophy [multisystem atrophy]. i was treated for parkinson’s for about 18 months but i was not responding to the meds. Parkinson’s would have been preferable but we don’t get a choice. Looking back, I think I have had msa for 4 yrs. I can still walk, just. I am having trouble looking after myself. I would like to hear from any other sufferers I come from the UK and I am a 63-year old female.
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[crushed]

I really feel for you Pamela, my wife was recently diagnosed with depression, but the drugs had severe side effects, so I took her to the hospital. Three months of tests, waiting, tests, waiting then 3 weeks in hospital & she calls me, happy as can be, to tell me she has mild Parkinsons. The next day I had to meet with her Doctors, Physio, occupational therapists & councillors to work out what we needed to do to bring her home. I should mention that I was relieved to hear the words Parkinsons, because I was convinced that it was MSA. I walked into the meeting, only to be told that it is MSA, and that her situation is extremely aggressive. Her prognosis is 6 - 12 months. She is only 33 years old, and we have an 8 year old daughter & a 4 year old son. Since she is so relieved to think she's OK, I've decided that she need not know what lies ahead, as the experts believe that her decline will be so rapid, she won't know what's happened. I cry myself to sleep every night carrying this burden, but I don't want her last year to be spent worrying about how me & the kids are going to cope, or how she's never going to see them grow up. I only hope I can somehow give all of my family the happiest year ever. I agree with you, & pray for a medical mirical soon.

Best Wishes
Frazer

Australia (born in Durham)

[sosad]

I'm so sorry. My husband has SCA which has evolved into MSA. Physical therapy has helped him retain some function. What we have learned is that the brain is pretty good at rerouting signals as long as you have the determination to follow through with a therapy program. I wish you well.

[3greycats]

My wife was diagosed with Parkinsons in 2006. With the disease progressing so fast the doctors said it was MSA in early 2008. She died October 19, 2008.