Update help me and my sister x

[clairebaby123]

I wrote a post last week and was so overwhelmed with all the responses and support so thank you all very much... Rebecca has been in hospital now for a month and in the last couple of days they have found an inflammation in her brain after having and MRI scan and lumber puncture...they think this is what is making her so severely paranoid, anxious and depressed also causing hallucinations, it's so sad to see her suffer in this way...they are planning to start plasma transfusion with her next week ( had anyone else experienced this ) we are hoping and praying that this will improve her mental health even though her MSA symptoms continue to worsen we can cope with this...it's the mental health that we are struggling with at this time....while in hospital another patient with MSA was admitted into her ward....she has had this condition now fir 14 years and to compare her to Rebecca was also very sad as my sister after only 2 years is at the same level as her...if not worse....the nurses have said in her 7 years at the hospital these are the only 2 cases she has seen. And Rebecca's professor has never seen a case like hers to deteriorate so rapidly....it's hard not to ask the question, why her ? Why my sister xx

[TK-67]

Hi - my mum also struggles with a lot of these symptoms - what drugs is your sister on? Some in MSA can make things worse?

[clairebaby123 in reply to TK-67]

Isn't it awful...she is taking madopar for her MSA amongst other meds for her depression and low blood pressure...she also takes a slow release at night along with quetapine...she has been on as many as 16 madopar a day which is a lot and I think this was a lot to do with her self medicating at one point...this was allowing her to be able function a little better but we're sure this is part of the reason for the mental illness...they are currently playing around with her madopar right now in order to reduce this but with out them she is unable to move and trapped in her own body...it's a lose lose situation unfortunately xx

[TK-67 in reply to clairebaby123]

It’s worth reading the side effects of madopar. Going on what happened with my mum your sister needs a lot less / mum was also taking a slow release overnight, this was accidently missed while she was in hospital after breaking her hip. The difference was amazing - luckily our consultant has MSA expertise. Since then mums taking even less. It is a balance but the mental health issues are harder to deal with then the physical - sadly it does become a dreadful compromise. Mum also now takes rivastigmine which helps a bit with the neurological symptoms. Sadly you’ll need to ‘shout’ a lot with doctors who don’t have any experience. Worth seeing if they would speak to the MSA trust nurses for advice.

[Hellebelle]

Thank you for the update. The mental health side is so important but quite often overlooked. What makes it doubly hard is if there are communication difficulties. The family are quite often having to work out and second guess what the person with MSA is wanting to say or how they are feeling.

My heart goes out to you and your sister. This condition is not fair and the sooner a treatment can be found the better.

Sending big hugs.

Helen xxx