MSA Meeting

[Rankin63]

I went to my first meeting for MSA in Inverurie, Scotland and found it very informative and welcoming. We discussed various topics relating to MSA and it was useful talking to people with similar conditions. It's a pity there are not more meetings. The next one is in October and I will definitely go back.

Mina X

[Marie_14]

Mina

I am glad the meeting was a positive experience for you. A shame the next one is not until October. I suppose it depends on who organises it? Perhaps they cover a large area?

Maybe some of the people who attended could just meet up for a drink or a meal more often? I know Parkinson's groups do that in some places. I suppose it depends how far down the track people are?

Take care.

Marie

[Yanno]

Hello Mina

I am so pleased your meeting went well. We had one today in Worcestershire that was well attended and was very interesting. I think we plan to meet after the summer and so probably September. Did you talk about anything in particular at your meeting. Take care, Ian

[Alisonleicssupport]

I run the East Mids group. We also have 2 a yr which was the recommended amount. The nurses like to be present at all the meetings so everyone gets as much benefit as possible. As there are at present only 3 of them they have a lot to cover.

I would be happy to squeeze extras in if anyone would like them but more on a social and sharing side without the professional input.

Maybe your co ordinator would consider doing that.

[Rankin63]

Dear Anno

We discussed lots of topics at the meeting including respite care, age when you receive aid for care,cannabis oil and its benefits, medication and the differences between MSA C and MSA P.

I unfortunately have MSA C which is not so common and a lot of the meeting dealt with troubles pertaining TO MSA P.

If you have MSA C you often don't have medication according to my MSA nurse.

I will still attend the next meeting as I liked meeting others in a similar position. Mina X

[Shoddie in reply to Rankin63]

Hello. My dad had MSA-C and there was unfortunately no medication to be had in relation to this condition. Hopefully there will be one day 🤞x

[FredaE in reply to Rankin63]

A lot of the medications are offshoots of other diseaes especially parkinson's and sadly have no relevance to MSA-C. People sometimes develop some parkinsonian symptoms later which may be helped.

My husband had MSA-P which also included autonomic and cerebellar symptoms. It was very obvious over time that an increased dose of Sinemet helped the parkinson's symptoms but not the others. Worth keeping an eye out for what is happening

FredaE