new to the site newly diagnosed

[Bamboot]

hi I’m new my husband has just been told he has MSA after months of thinking it was Parkinson.

It’s blown our minds at the moment trying not to think to negatively. The specialist said he’s probably had it for 10 years. He has very low blood pressure when he stands up after sitting. He can only walk with the aid of his walker from sofa to a chair then from chair to toilet. Same steps to get to bedroom. We moved from a house to a ground floor apartment. When we go out which isn’t very often he has to use a wheelchair. He suffers from pain in his shoulders and neck back of head as well as headaches when he wakes up. He also has bad REM sleep.

He has urgency for the toilet last year he suffered several UTI’s. Obviously our worry is how quickly it changes / gets worse.

[TK-67]

I’m so sorry you’ve found your way here but pleased you have as there are many here who can give you support and advice. Have you registered with the MSA Trust? That’s a good place to start. Also is your consultant an MSA specialist?

[Bamboot in reply to TK-67]

Hi there Thankyou so much for your reply it’s all a bit scary at the moment but I’ll take your advice on board.

Doreen

[Diane831]

hi. I am sorry that you have this diagnosis but welcome to the community.

The advice above about the MSA Trust is so helpful, do join and get the access to so much professional advice and support.

You will quickly learn that everyone’s journey with MSA is different and that the actual set of symptoms that your husband experiences will be similar to, but not necessarily the same as, other sufferers. There are no hard and fast rules as to how fast symptoms come on and in what order. You just travel your journey, getting as much help and advice as you can as you go along, dealing with each new twist in the road as quickly as you can, and trying to make the most of every day. Moving to a ground floor apartment was a great choice!

Having a diagnosis doesn’t change things, but does give you a strong platform for making choices going forward,

Diane

[Bamboot in reply to Diane831]

Hi there Thankyou for your reply good advice. It’s all a bit scary as we had got it in our minds it was Parkinson’s now with this diagnosis everything changed. It seems MSA moves faster.

Doreen

[esj20]

Hi Bamboot,

sorry you are here but glad you found us.

I cant really add to what has been previously said but the MSA trust are amazing, never take no for an aswer and never stop asking questions.

Yours

Alec

[Bamboot in reply to esj20]

Hi there thanks for your reply I do ask questions never afraid to ask. It’s important to try and find out as much information as I can so I can deal with it.

Doreen

[Paul_and_Sue_Wood]

Hi, welcome to a group that are all on the same journey but at different rates and routes, but are all here to help each other with advice and ears to listen.

If you have any questions ar just want to rant then we are here for us all.

The wealth of knowledge and help is sometime staggering to see happen on here.

You will find that everyone symptoms and progress is different as this condition affects everyone differently.

The way to work is plan the worst and hope for the best.

Ask away and good luck.

Paul & Sue

[Gill-C]

hi! Just wanted to add my welcome to everyone else’s. We all, I’m sure, remember that shock of diagnosis followed by a flurry of activity as we try to make sense of it.

I don’t have anything enlightening to add. Everyone approaches the journey in different ways. I made endless lists - to do/to get/to ask at the next appointment etc etc. It somehow helped me to clear my head.

The other thing I would offer is not to be afraid of hospices. I avoided them like the plague for ages, but actually they have super “outpatient” resources to offer including counselling.

Good luck! There are lots of super people travelling with you on this forum.