Questions : Hi everyone! My name is... - Multiple System A...

Multiple System Atrophy Trust

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Hi everyone! My name is Michelle and I was diagnosed with parkinson's disease a year and a half ago after a crazy decline in health over a year. By the time they had me try carbidopa/levodopa I could barely walk with a cane. 5 days after starting the carb/lev I was doing great. But over the last year and a half they have had to keep increasing my dose to keep me functioning at the same level. I'm now on carb/lev 10/100, 2 and a half pills and 1 25/100 ER every 2 hours which I think is a crazy amount for only being diagnosed a year and a half. My neurologist doesn't think it's MSA because the carb/lev helps but I think it is because the response to a dose change doesn't last very long. I'm just wondering what everyone here thinks. I've always been akinetic rigid type, no tremor at all and even at this high doses I've never had dyskinesia. Thanks to everyone who reads this really long post!

4 Replies

Hi michellandak

It is not possible to diagnose MSA without seeing a patient and i am simply a former carer anyway not a medic.

It is often not possible to diagnose MSA with all the tests in the world. but the main thing that everyone has in common is that they are all different if that makes sense to you.

Parkinsons is the failure of predominantly one part of the brain. MSA is a failure of a varied selection of parts of the brain . I describe it as a pick 'n' mix.

If one of those parts is the Pd part then Pd medicine may help.

It may help a little and wear off quite quickly or it may help a lot and last for longer. It can last for five years as it did with my husband by which time he was on more than the recommended max dose and that had to be carefully timed through the day until it eventually wore off and had to be slowly withdrawn, or it may be what the books call ephemeral . There is a widely held view among many medics that Levodopa only helps Pd patients which is not correct. MSA is a rare disease and many medics don't have experience of it even at consultant level

I am afraid the answer to your question is - yes It is possible.

I suggest you get in touch with the MSAT nurse specialist for your area. Go to the MSA website at msatrust.org .uk

You will find them very knowlegeable and extremely helpful.

FredaE

Hi Michelle . My partner took madopar almost until the day he died, as there was no doubt that , it helped him.he was diagnosed at the age of 50, and was 60 when he went. Madopar was prescribed almost from the word go. Doses being upped along the way as necessary. His neurologist, who had seen MSA before, said it helps some people. He had no discernible tremor unless he missed his medication, and when trying to use fine hand movements. He had rigidity only in his last 3years, and dyskinesia at times, firstly during the night, that phase moved on. And as the disease progressed it reared its head at times mainly in his last year but even then , only minor . Everyone takes a slightly different journey thru MSA with many similarities . We were lucky to have a neurologist who knew what he was looking at. Billy’s diagnosis was confirmed after he died, thru brain donation to research. I wish you well on your journey.

contact the MSA Trust, there information is invaluable, and their nurses are caring and helpful.ask questions on here, there is possible more knowledge here than in your doctors surgery. My only other advice would be, do everything you want to, sooner rather than later especially if you are on a plateau, as MSA seems to take a dive unexpectedly, before it again plateaus.

Take care. Beverley

Hi Michelle - are you in touch with the MSA Coalition? While you are always very welcome in this group, I gather that you are based in North America and given how different our health care systems are, it would make sense for you to be talking to people at home for support.

multiplesystematrophy.org

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Thanks!

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