Hi, just been to see neurologist with my husband after a 9month app, he had a dat scan 6 month ago and went to get results, he has been told he has multiple system atrophy with cerebella ataxia.(MSA C)
Does any one know about the progression of this?when I asked if it was an aggressive or rapid progression, all he said was that he's already had it from 2012 and he's still going, in that year he was walking with a stick going out not many problems, now he uses a walker and scooter when he feels ok to go out, bladder problems and fatigue.
Next app in 6 month. Not sure if it's me but I think it progressing quickly, can any one tell me what is in store , as I have secondary progressive m.s. I would like to know them I can be semi prepared. Thank you. Sorry about the length.
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Edward1958
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My partner is the same ca has progressed quick we had our dat scan on Friday phone for results in 2 weeks ? I think we know already as the way he has detriated xx
I was diagnosed Progressive cerebellar Ataxia then saw the Ataxia clinic and was diagnosed MSA. I have a DATSCAN booked for end of April which will decide whether its MSA P or MSA C.
Check out the MSA trust site and join. They are very informative and have 3 very good support nurses who will speak to you on the phone about the illness and its progression.
See your own Doctor and give them the literature that you can get from the MSA trust (remember they probably have never heard of MSA). They should they flag you up on their system as an urgent case for seeing and also set up a multi disciplinary team for you.
Also its very topical at present but don't forget to claim PIP.
yes I have cerebellar ataxia. been ill for 15 years with problems swallowing and walking. went to a rheumatologist who diagnosed mixed connective disease- I asked for a second opinion 2 years ago and finally saw a neurologist who diagnosed CA . my walking is nil now outside . I get round the house with a zimmer. I have a stair lift. I was offered a powered wheelchair which arrived 2 months ago but I m still waiting for a ramp so \I can get out- the ramp was ordered from the local 5 council 5 months ago- until it arrives I m stuck indoors. My partner of 21 years left me as I was too disabled for him so that was nasty but at least I can do what I\ like when I like eg TV programmes and going to bed and getting up. My swallowing is bad but the speech and language therapist made a difference. there is a disabled centre near me and I go there to use the gym and take seated exercise classes. the decline in my mobility is really bad so next month I go to the hospital ( Atkinson Morley ) to have a lumbar puncture as the consultant said if they drain off a lot of CSF it may help my mobility. I do get depressed as in the last 3 years I have had to give up playing the violin and piano, can no longer hand write as my hands DON'T WORK PROPERLY using the keyboard is hard. some friends still come and see me but basically I am on my own a lot of the time and feel very tired all the time. the cold weather make everything worse. the neuro said they do not know how quickly things will change so I just hope for the best and I do see a counsellor privately who come to the house as I don't like moaning to family and friends too much. I have incontinence problem s too but the products really give me terrible rashes. everything takes a long time. I do all my shopping on line ( including food and also the milk delivery as they offer a range of products ) all you can do is try to do something that you enjoy every day. I am sorry that I can no longer do things for my 4 grandchildren- the last time I drove my granddaughter to dancing I had a minor scrape- caused by poor night vision but it has put me off but with the better weather and warmer temperatures I hope to get behind the wheel again- the DVLA assessed me as safe to drive but I would never drive if I felt unsafe. I use the attendance allowance to pay for cabs- hope you have applied for it. it is a nasty illness but life is still worth living! all the best Sylviaxx
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Really, why????
