First timer

[Scragger]

Hi there

I am a carer for my wife (78) who recently received a tentative diagnosis of MSA. Current symptoms include hand and head tremor at rest, slow mobility, bladder and occasional bowel issues although these were present pre diagnosis, but bladder problems are now almost out of control, maybe some speech issues, sore shoulder and neck in the morning, excessive day time and early evening sleeping, probable sleep apnea.

A sleep apnea test is coming up next week. If positive, I’ll be interested to know how to differentiate between pre MSA and MSA diagnosis symptoms. Waiting to see a neurologist specialising in movement disorders.

I come from a family of MND victims and I’m surprised at the similarity of some symptoms, short and long term, even though I know they are two unrelated diseases. I’ll be interested to learn of the experiences of other people who have been diagnosed with this terrible, rare and fast moving disease.

Kind regards to everyone.

[thedjsupreme]

I am 53 and had it at least 1 1/2 years. At first I struggled on but was diagnosed last June. I can still walk with a stick, arms shake,standing blood pressure is an issue as is sleeping issues. The msa society help with monthly meetings

[TK-67]

Hello - I'm sorry you've found your way here, however there are lots of people who can understand and help. The challenge with MSA is that the symptoms can often be attributed to something else and diagnosis can be difficult. My mum was initially diagnosed with Parkinsons in 2012. It was only when the drugs stopped working and she began to deteriorate quickly in 2019 that this was changed to MSA. There is no real 'test' to diagnose it and as with mum, it was then apparent it had always been MSA. Early treatment though would have been the same so an earlier diagnosis wouldn't have made much difference.

The other big challenge with MSA is that everyone is very different - it all comes down really to the management of symptoms in the best way - for us that meant having a consultant who knew about MSA (as it's rare, not all do) and having a plan to manage what is happening/coming - that helped us with the unpredictability and making sure the right care was in place. Sadly mum died in 2022.

We just focused on the good days which made it easier to deal with the 'not so good' days.

If you have any questions - always come back here, I found there was always someone who could help.

I can see you are in Australia, we have a very good UK charity - the MSA Trust. They may be able to sign post you to local support for you and your wife. One place that really helped us was the local hospice too.

[Scragger in reply to TK-67]

Thank you for your interest.

[Photo1250]

Hello - sorry you're here, too. As to the rampant bladder problem, I can only tell you of my wife Adrienne's experience. Adrienne was having problems at night with nerve pain and her specialist changed her from the Citalopram she was on for this to Duloxetine. So, the Duloxetine prescribed for nerve pain (also covers anxiety and depression). Turns out the NHS also prescribe this for stress incontinence in women. The bonus effect of this, was that Adrienne's very frequent peeing which got us up multiple times through the night, is now reduced to between 1 and 4 times a night! Much more manageable and we actually sleep for a number of hours between visits. I know it might not work for everyone, nor indeed, may your doctor agree. But just thought I'd mention.

[Scragger in reply to Photo1250]

Thank you.