My wife was diagnosed with Parkinson's in September 2023 but on seeing a neurologist last week he says she might have msa.She's been on madopar since September but it appears to have made very little difference so he's upped the dosage to see if it helps.
We'd just begun to accept the Parkinson's diagnosis then this hits us like a ton of bricks.
Is there a definitive test that can be done to confirm one way or the other what's going on?
It's a very scary time at the minute.
we’re in the same position as you Seasider and have been told that there are no definitive tests to confirm MSA. My partner has several but not all of the symptoms associated with MSA and the last Neuro Consultant that we saw in December admitted that he wasn’t sure.
It’s just a waiting game to see how symptoms develop over time and as far as I understand it at this point they will adjust the current medications to see if anything changes to steer them towards a definite MSA diagnosis.
I’m trying to be proactive and make plans for changes needed in the home etc but everyone is different and the disease progresses at different rates for each individual so it’s not easy.
I have found some invaluable help and advice on this site.
Best wishes to you both
Shooey
Hi Shooey
The first neurologist told my wife he was leaning towards MSA-P. The next neurologist said there was no MSA. He seemed to put a lot of emphasis on the fact that my wife had no REM sleep behaviour disorder. This despite she has many other symptoms of MSA. Is REM sbd one of your partner’s symptoms? Kind regards.
Hi Scragger
In April we’ll have seen 4 different Neurologists, two specialist Parkinsons nurses and several other clinicians of differing specialties!! I can’t answer on the REM sleep behaviour disorder as currently we’re in seperate bedrooms, he suffers almost nightly with bouts of heavy sweating and the need to pee every couple of hours so we agreed that it would be better if one of us had a reasonable sleep!
We’ve been told that the Neurologist we’re seeing in April may decide to bring him into the MSA clinic rather than the Parkinsons one, he doesn’t have ALL the symptoms but in excess of 50% of those listed so we’ll just have to wait and see.
He is still taking meds prescribed initially for PD but they don’t really seem to be having any positive effect so dosage has been reduced to see if that makes any difference , so far it hasn’t which led us/them to believe it wasn’t straightforward Parkinsons.
A Typical Parkinson’s , possibly MSA was the diagnosis two years ago but, and I appreciate why, a definitive diagnosis hasn’t been confirmed.
So, we’ll see what happens in April and go from there.
Best wishes
Shooey
Thank you for your response. First impressions are lasting impressions and I won’t forget our first visit to the neurologist who told us that he thought my wife may have a rare form of Parkinson’s Disease (MSA-P). I still think the second opinion Neurologist (the expert) is wrong in his diagnosis of no MSA. I see my wife’s symptoms daily and they are not improving, What can we do but wait and see what develops over the next 12 months. Good luck with you and your partner’s situation.
Kind regards
Hello,
Sorry to hear your news, but welcome to the forum. Plenty of helpful people here and have a look at the MSA Trust who are also excellent.
I don't think there is a definitive test, it seems to be the elimination of other causes and the experience of the neurologist.
My wife is not on any MSA medication, tried some PD meds but it made no difference.
Take care
Derek
The waiting period is so difficult. We were in that period for about 2 years. Strangely, it didn't really bother my husband (who now has an MSA dx). He had been having strange symptoms for about 5 years prior - a lot of autonomic dysfunction - but it was the urinary retention and fast decline that eventually provided a more definite diagnosis. Try to stay positive - if it is PD, the journey is manageable for most. Ruffner
Hi seaside,
Sorry to hear your news, hard times. My mums MSA-P diagnosis was termed a 'working diagnosis' with 99% accuracy as there is no 100% test until she's gone. Neurologists will always hedge thier bets it seems...
We're towards the end stages now but there was a time when madopar helped, it certainly made her more comfortable with the shakes she was experiencing being reduced. I'd agree with derkies suggestion to get in touch with the msa Trust. They are just brilliant and so well informed and supportive.
Is suppose we are lucky in a way that mum's physical decline has been matched by her cognitive decline. She doesn't know or remember how poorly she is. We still sing (badly) and share our news each visit and life has become something very much "in the moment".
And those moments can still be just brilliant....
Ollie
Ollie, my husband also has cognitive decline that, at times, is more debilitating than the other more common symptoms. He does not realize how much he has lost the past year or two. I often read that cognition is spared in MSA. I wonder if it is the combination of his age (79) and the disease. Do others who have a more typical diagnosis in their late 50s/60s also have significant cognitive decline?
hi! For us my husband was unable to tolerate and ledopa meds. They either worsened the symptoms or had no effect. A cocktail of pain killers also failed so now just simple paracetamol 4x a day and hyosciene patches. He’s a lot better. We were diagnosed 2021 age 51. Jon is now wheelchair bound, hoisted, and can no longer speak. I would definitely advise to voice bank xx
I'm so sorry to hear your news - one thing to watch is that Parkinson's drugs in people with MSa can have extreme side effects, so increasing the dosage can lead to issues, so keep a close eye on symptoms. As others have said, have a plan and make sure you get the right support around you. Sadly there is no real test, it was thought my mum had parkinsons for years before a whole host of things led to the MSA diagnosis. It's a rare condition and everyone presents differently. Mum did have REM sleep disorder but it didn't get severe until later on.
Thanks everyone for your helpful advice. Like you say, I think it's a waiting game. Her Madopar was increased slightly, but this had the effect of her appearing drunk and slurring her words. Now dropped back to original dosage but an extra slow release at bedtime.
We'll see what happens.
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