Hi everyone on the 18th dec 2011 i was diagnosed with msa after 2-3 years of symtoms.
I`m 50 with a young family and finding i very hard to keep up with them around the house.Is there other on this forum who has this Rare disease who would be willing to contact me.
Yes i have a very supportive family but there not really anybody who knows about msa.
I appreciate how you feel as when my husband was diagnosed with Parkinsons at 39years we didn't know anyone with it and once we contacted Parkinsons UK and met many other young people we felt a lot better as we could share our experiences. I was involved with a local branch for many years and we had members with MSA and PSP as well as Parkinsons so I hope you don't mind me writing to you with this information and I hope you will find some support. All the very best. Vivian
There is an organisation for MSA if you look on the web site.
The main London number is 02079404666 or the North area contact is katie Rigg 01434381932 the South contact is Samantha Pavey 02033710003
What's the difference between pd and msa.ive got all symptoms that match both.can you help please.twins99
According to my neuro MSA is incredibly hard to dx. I have a pronounced drop in blood pressure on standing which along with a couple of other symptoms is giving her concern and she has referred me to Falls and Syncope for some further tests which should help refine the problem of PD or MSA. Apparently MSA and PD medication is the same but the big difference is that PD responds well where as MSA does not.
I started on medication 12 days ago and have already noticed improvements so am crossing my fingers I have PD.
Hope this helps a bit.