Multiple system atrophy, Parkinsons plus, Shy Drager syndrome

LegacyUser

Does anyone here know anyone with this condition? Is there a society in Ireland for patients? I know I could contact the Parkinson's disease society but this is a lot more complex than PD (and I say that as someone with a relative with PD).

Gottalovegreys

You could try joining the Progressive Supranuclear Palsy association in the Uk. They cover other neuro diseases such as MSA too afaik. They come here (to the mater hospital) about 4 times a year and hold carer support/information meetings, and have a nurse specialist you can contact by phone.

http://www.pspeur.org/index.html

PauloMN

It's very rare, there's no specific MSA society here in Ireland as far as I know.

The MSA society in the UK would be a good place to start:
http://www.msatrust.org.uk/

PauloMN

Meant to add I knew someone with this condition, so if you have any questions I'll be glad to help as best I can.

Diamondgal

Hi,

I would get in touch with the Parkinsons Association in Ireland. Both Parkinsons and MSA are very similar in symptoms which makes it hard to diagnose sometimes. I have a family member who is being treated for Parkinsons but dictors feel that they may have MSA. We have been seen by a Parkinsons nurse who gave us excercises to do etc. and they do help with movement etc.

LegacyUser

Our mother was diagnosed at 52 with parkinsons and 5 years later they determined that it was msa/p because she was not responding to the typical parkinsons treatment of levodopa. She was diagnosed by a Dr. Cambi at the University of Kentucky. She has had the disease for about 8 years now. The difference between the two diseases seems to be that with parkinsons the individual not only loose control of the body but the mind also goes whereas with msa the body shuts down but the mind stays as sharp as a tack. There is no treatment for msa so they use parkinson medicine to medicate the best that they can to try to control some of the symptoms since they are similar in nature. Our mother currently takes a medication called Stelevo and it does only a fair job if it is taken at the same time 3 times a day if not the dykensis becomes almost unbearable for her. The most accurate description we have seen is at a site called rarediseases.about.com . I do know that with msa and the stelevo there does not seem to be the typical hour window on either side of the dosage time. It is important that she gets the medicine at the exact time daily!

redlavalamp

my mom has msa, about 8 yrs now. diagnosed at 52 with parkinsons and didn't respond to typical levodopa treatment after about one yr. Dr. Cambi at the University of Ky diagnosed her with msa about 5 yrs ago, she is sixty now. She takes Stelavo at the same time everyday 3 times a day or her dykensis becomes overly exaggerated and takes around 3-4 hrs to regain, there isn't the typical 1 hr window before or after that medical personel usually have with meds! the main difference between parkinsons and msa is that usually with parkinsons the mind goes with the body. This is not the case with the msa, the mind stays as sharp as a tack. verbal communication is almost gone (about to try a speak and text verbal assist medical device) and her tongue is torture with the movement so difficult to eat. Trick is to get food a little farther back in the mouth and not at the front or will fall back out due to tongue movement. wonderful description of msa is at raredisease.about.com