I was dx with Parkinson's 8 years ago and am under allegedly the top Parkinson's man in the business Prof Chaudhuri at Kings College Hospital. For approx the last 4 years I have been suffering episodes which seem not to be usual parkinsons symptoms. These occur mainly after eating and after emptying my bowels (which in itself is not problematic in that I go every day and quite easily without strain). It is as if my body goes into a kind of shock state after these two activities and I become paralysed i.e. unable to move any part of my body on my own. I also get terrible coat hanger pain across my shoulders and neck and what feels like nerve pain which radiates up to the base of my skull into my jaw and teeth and is excruciating. I have pondered for some time that I may have MSA but my consultant says he doesn't think I have it but is unable to justify why he thinks I don't have it. These symptoms have been getting progressively worse until now when I spend more of the day paralysed than I do mobile. When not paralysed I am extremely mobile and able to do everything for myself and you would not think there was anything wrong with me. Is this usual? The parkinsons medication is becoming less and less effective and sometimes doesn't work at all. My question is how do I proceed with getting a diagnosis or ruling MSA out????
I am due a head to hips MRI in a couple of weeks is there anything they should look for specifically with regard to MSA?
Kind regards Diddlydi
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DiddleDi
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HiAs you will find out MSA can only be definitely diagnosed by a brain biopsy, which of. course can only be done when your no longer with us! Until then MSA is either "possible" or "probable" and these are declared as symptoms progress.
During this progression the consultant is only looking to diagnose MSA after all other potentials are eliminated.
MSA affects multiple nerve systems at the same time with differing symptoms and timescales for each sufferer. There is no cure, it is life changing and shortening, it can only be managed.
If you can not have MSA I would say that is better just concentrate on the current issues and aim to alleviate them.
HiSorry to hear of your discomfort. My sister was diagnosed with MSA in 2000 and died last year. This made them question the MSA diagnosis because if MSA they expected her to die earlier. On review they still thought probably MSA while she was alive. However when they looked under the microscope they decided not MSA but atypical Parkinson’s.
In the early days Sue had a lot of coat hanger pain, loss of balance and postural hypotension. In 2005 she was advised to stop trying to walk and was bed bound from then on.
She took “Parkinson’s” medication through out and they worked with limited success.
You never get a definitive diagnosis of MSA, only a ruling out of everything else.
Good luck I hope you can find solutions to lessen your symptoms. My suggestion would be listen to the doctor’s advice and take any medication they prescribe but also try some of the complimentary options if you can access them. (My sister found a physio massage and acupuncture helped her manage her condition, also I recommend art psychotherapy/counselling for the mind and spirit.)
It's a good question but there's not an easy answer.
My wife had been struggling for many years, initially with balance issues.
Diagnosis was first MS then sometime later it was PD.
I think it is the expertise of the neurologist that makes the difference, ours eventually ruled things out and came to the conclusion it was probably MSA-P
We don't worry about the label any longer and just get on as best we can.
Worth noting that in my wifes case there was no improvement at all when she had the PD meds, also many MSA sufferers have a different journey.
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Just introducing myself
Undiagnosed 
My Dad and MSA
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