Update on my wife

[Derek1uk]

Hello everyone, my wife (Jackie) was diagnosed with MSA after an initial diagnosis of PSP on 29th Jan 2023. Now the Neurologist is trying to say her condition is Perplexed and that Wilsons disease is a possibility. She's been to have her eyes tested at Vision Express and after a thorough (90mins) examination they said there was no sign of copper in her eyes but will refer her to an eye specialist which could take 18weeks!!!!!! She's now been admitted to our local Hospice due to breathing/swallowing issues (also on thickener and smaller cut up food) and today is due to goto Salford Royal for an EEG. Plus we've been told by the Senior doctor at the Hospice that Jackie could have a blood clot in her leg that the hospital she attended on the 11th March KNEW about but didn't do anything about!!!!! So now the Hospice are saying if THEY can't treat the blood clot she may have to go back to the incompetent same hospital!!!!! Meanwhile my wife's head is all over the place and would like to talk to someone with MSA knowledge and hasn't had any details of North of England forum groups to VENT or share stories and just chat. Anyone help please. I'm also her main carer/husband.Thanks Derek

[Paul_and_Sue_Wood]

Derek

It's a frustrating condition and care is variable across the country because of the rarety.

Have you contacted MSA trust as they have specialist nurses?

This group is also good to vent and ask questions or seek advice.

Paul

[Diane831]

hi Derek. You are certainly in a really tough place just now and it’s no wonder that your heads are all over the place.

There isn’t a North of England Forum particularly but there is a Greater Manchester support group that meets in person every 3 months. The next meeting is 22nd June in Bolton. There are also virtual meetings on Zoom, but I don’t have the date for that, it is organised directly by the MSA Trust.

The artist is definitely your first port of call

msatrust.org.uk/

There’s also a Facebook page.

MSA UK and Ireland where there a chat facility to connect with others who are going through this or have experienced it.

Hope this helps

Diane