Diagnosis of MSA

[Leslim]

How are you or your spouse diagnosed with MSA? Can you take parkinson medication to relieve symptoms? Or any medication?

[Yanno]

Hello and welcome. There’s a short answer to your questions and a very long one! Probably the best place for you to start is by looking at the MSA Trust web site where there are a number of fact sheets answering just the questions you ask.

The Trust also has specialist nurses who will help and support anyone with MSA.

The Trust web site is msatrust.org.uk.

Take care, Ian

[FredaE in reply to Yanno]

There is no such thing as a definite diagnosis - just possible or probable

The parkinsons meds may help people with Parkinsons symptoms, MSA means multiple systems atrophy - Parkinsons is a fault in one system in particular and there is a Parkinson's med which will help with this.

Other meds are to help make particular symptoms easier to live with but they vary with their effectiveness from patient to patient and time to time. I am afriad there is a lot of trial and error ahead of you . best wishes

[IvyRose64]

I think it might depend on who your neurologist is. We were lucky to get one who recognised MSA but Al was seen at the Parkinson’s clinic. I think also Al was already exhibiting some of the other traits of MSA such as incontinence. With regards to meds he never really took anything he did at first but after 6 months the doctor said they weren’t working and stopped prescribing them. In the last 6 months he was on something to help with mucus breakdown but other than that and pantoprazole for GORD he was on no meds for MSA. As mentioned before what works for one might not work for another.

[Hidden]

The trouble with diagnosis we found, when Peter's problems began, like many other people. You go to your GP. There you can only discuss one issue. Peter's started with low BP. Then urology issues, then tingling feet. It was only when i watched him crossing the recovery room to fetch a C-arm for theatre his posture and walking gave me cause for concern. At this point i asked a surgeon, who knew Peter to speak to him, thinking it could be his back. After MRI scans ruling out his back and other discussions they suggested it could be neurological! We were referred to the neurologist who did recognised all his symptoms. After a nuclear medicine scan his diagnosis was confirmed. Peter had lots of symptoms that were infact linked. This was over the course of years but you don't for one minute think there's a problem. So 2018 was awful, getting used to life changing illness, having three children who he won't see grow up into men and grieving for a retirement he isn't going to see is hard. But as many say look at the here and now, live in the day we're in that is what keeps us motivated. Yes it awful but at least you know to make every day count. Best wishes. X

[Leslim in reply to Hidden]

Does DBS work?

[Wildshire]

Mum is now on a cocktail of pills since her diagnosis of Parkinson’s 2 years ago but she also has osteoporosis diverticulitis and suffers from anxiety. Just this week following an MRI scan, her consultant concluded she probably has MSA-P. We’re not convinced that some of the pills are working for her, more likely possibly against her (she gets withdrawal type symptoms when they are due to be taken and is waking at 5am every morning when bed time meds wear off. She’s also very constipated so taking pills and medicine to help with that). The Parkinson’s nurses and GP are unlikely to prescribe anything else since there are no meds specifically for MSA so I’m afraid it’s just very much trial and error to see which ones give some relief. Best of luck.