Hello

[Crafty-grandma]

Hi, my husband has MSA-p - would love to hear from anyone else in the uk in the same position!

[Derkie54]

Hello and welcome to the forum.

My wife has MSA-P, it was diagnosed about 3 years ago although thinking back it had been coming on for some years.

You will find many people have their own set of symptoms, my wife's started with balance issues.

It's a friendly forum here so if you have any general or specific questions then fire away I'm sure someone will be along to help.

Sometimes it good to just share what's going on, entirely up to you.

Regards

Derek

[Crafty-grandma in reply to Derkie54]

Thank you, Derek. My husbands main problem at the moment (apart from mobility) is facial spasms especially around the eyes. They can remain shut for hours at a time. He’s hoping to have Botox injections to see if that will help. Would be interested to know if anyone else had any experience of this problem

[Derkie54 in reply to Crafty-grandma]

As it happens that is a symptom my wife has as well I think they call it blethro spasms.

She has this in her left eye only and it closes the eyelid, they have also suggested Botox injections but she's not keen on having it done at the moment, I think it has to be repeated at intervals.

[Fgsm]

Hello . Reply from London. My husband diagnosed April 2019 after years of misdiagnosis . He is 69 . Walking now is a problem and some cognitive issues.

[Crafty-grandma]

Thank you for replying - good to know I’m not alone. Husband has only just been diagnosed but is a long way along the journey. Just have to take each day as it comes don’t we?

[Hidden]

Hello! my dad has msap and has some mild spasms in his upper jaw.sometimes his jaw gets a bit stiff/locked and it's hard to open his mouth. It's as if he has to wait for the signals in his brain to come together to do it. (We think he's had the condition for about 10 years.)

It will be interesting to see what you find out.

Thank you for posting and sorry you need to be here. Kx

[Crafty-grandma in reply to Hidden]

Thank you for replying - it is so hard to watch, knowing there’s nothing you can do.

[Hidden]

Absolutely. And yet we turn and face it anyway. I get consolation from doing everything I can think of to keep Dad as comfortable as possible. (Within the limits of practicality and my sanity!) x