age of onset with other factors

[rt4rtl]

I've read studies which suggest MSA has the greatest prevalence in the 50-60 age bracket, and I've read other studies which suggest the incidence peaks in the 70s. In the older age bracket, could MSA have such a rapid downhill course it escapes studies that might otherwise catch it? Here's a Facebook note I've written on these kind of diseases, and I've also uploaded it as a doc in some groups. facebook.com/notes/robert-t...

[FredaE]

Hi I have already tried to send a reply and was told `I do not have permission so I will try again. A short version this time

Statistics are useless with Msa. becaue they depend on date of diagnosis

[FredaE in reply to FredaE]

There is no such thing as a definite diagnosis anyway and patients tend to be rediagnosed several times over a period of sometimes years. This is no-ones ault. MSA is horrendously difficult to diagnose

This makes a complete nonsense of any attempts to put a figure on life expectancy made worse by the fact that everyone's MSA progresses in diferent ways and at different rates

Certainly not every one with MSA makes the statistics.

[Yanno]

I’ve seen Freda’s comments and entirely agree - all the people we have come into contact with through the MSA Trust support groups here in the UK have similar issues but they occur (or don’t!) at different times. I have heard so many times people liken it to a journey every sufferer is going on but each with a different route.

Early on in Jackie’s diagnosis we took a decision not to worry too much about the specific diagnoses and comparisons between variants of Parkinson’s. If there was a wonder drug that was successful with one variant, then yes let’s push like mad to see if it’s relevant to Jax. If however, we are looking at palliative care whatever the dx then the most valuable medicine is a positive mindset sometimes not asking “why or what” too often.

Take care, Ian

[Leanneforbes51]

MSA is a total mystery it effects everyone differently especially the progress of it . I lost my husband to it he was aged 45 and in his last year he progress very quickly it's a cruel, heart breaking disease.