Multiple System Atrophy Trust

MSA or Parkinson's? I'm not sure

About three years ago, my consultant arranged for me to have a CAT scan and a DAT scan, which indicated I had a form of Parkinson's. One specialist opinion was that I have Parkinson's (PD), on the basis of the other thought I had MSA because of my symptoms and scan results.

This is not the typical PD, in that I have no tremor. Medications such as Sinemet do not seem to alleviate my symptoms. These are difficulty with balance and walking, and urinary incontinence. I find writing and typing much harder than three years ago.

Generally I can read, and understand what's going on in the world around me, but my lack of mobility is a real nuisance.

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I was diagnosed with Ataxia in July last year after finding my left leg wasn't doing what I wanted it to . Then I got a new neurologist and she sent me for aDat scan which confirmed I had MSA in January I am now only walking in the house wheelchair outside can speak but only family can understand me I have no treatment as yet except physio .I think I was playing football this time last year with my grandsons and did all sorts of sport .

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There is no diagnosis "definite MSA" What you get is either "possible" or "probable" based on Symptoms.

Msa is MULTIPLE system atrophy. There is whole range of systems in the brain which you may or may not have trouble with. Everyone is different. Like a queue of shopping trollies at the checkout, patients all have the roughly the same sort of thing but no two are quite the same. The shop tries to build up a picture of each family from the stuff they buy. Some is easy - buy pet food and you almost certainly have a pet. Never buy petfood and you probably havn't. A regular buying of lemon marmalade may mean the whole family only likes lemon but not very often or only one likes it and eats it every day. It is not until they stop buying it at all that you think probably or possibly it was one person who has moved away

This is how The Beast is diagnosed, by watching what happens over time, and trying to gauge its signifiance and it is very frustrating and diffucult to cope with. There are lists of symptoms with probability. For instance marked Parkinsonian Tremor says Parkinsons not Msa

The list is on line I am sure someone will come up with the link for you

As scans get more sophisticated they are getting better at diagnosis but they are not there yet.

Sinemet and similar drugs usually help with Parkinsons and often help with the version of MSA which has a lot of Parkinsons symptoms. That makes sense because Parkinsons is a failure of one particular part of the brain. If your version of Msa includes this particular bit then the Parkinsons Medication Sinement may well help but if it does not then Sinemet may well make things worse. People will sometimes say "Dont touch Sinemet, its poison" Its not - its just not right for their particular MSA. For thePd form of MSA it can work wonders with some of the symptoms

To make things more complicated, at any one time an unknown proportion ofpeople diagnosed with Parkinsons will, as new symptoms appear, be re-diagnosed with something else like MSA. If someone with Pd gets no benefit from Sinemet there may be doubt about the diagnosis and it certainly makes collecting statistics more difficult

Hope this helps you to understand why medics who disagree are not just incompetent. they are playing a form of 3 dimensionsal chess and its not easy



Thank you for your comments.

I agree that diagnosis, which is often crucial in acquiring NHS treatment,is very difficult. This became a problem when I needed travel insurance. I tried to explain about MSA, but the insurance turned me down flat. Fortunately another insurer accepted my condition as a form of Parkinson's, so we could fly.

So now I list my condition as "Parkinson's plus", as my first consultant suggested. That answers my question. But I wanted to know what the MSA Trust considers -what is MSA, and how is it different from PD?



Our usual insurers had no idea about MSA - I had to keep on telling them "no this is multiple systems atrophy, not Multiple Sclerosis!!!" In the end I changed insurers to ironically ones we used to use for off piste skiing. They were superb, immediately knew of MSA, asked knowledgeable questions about progression of symptoms and then gave us full cover for annual insurance for a surcharge of £60 (and excess of MSA related claim). I thought this was really good value and we took insurance out prior to our subsequent trips to Myanmar (Burma) and St Petersburg. If you want details then send me direct mail.

I would repeat what others have said elsewhere in this community, don't put off doing things or travel, embrace it and enjoy what you can.

There's lots of information to download about MSA on the MSA Trust web site, have you seen that?

Take care, Ian

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