clinic trial

Andy, I don't ascribe to clinical trials. my neurologist told me that if things are fine and I can deal with them like they are to leave trials alone. The old addage" if it aint broke don't fix it".

 

Stan

Thank you Stan

Stay strong

 

Greetings Andy:

First let me say being diagnosed with MSA is a really hard thing.  I know for me I had symptoms for years, going from specialist to specalist seeking a diagnosis, but after recieving one as horrible as MSA it really made it worse, not better.  So I am sorry for your diagnosis.

I find it very helpful for me to particapate in clinical research studies, but I do not do any of the ones that include a medication.  Clinical research can really use help with all kinds of testing, these studies are looking for a diagnostic cure rather than a magic pill to stop the disease.  I feel like particapating will make a difference, allowing doctors to give a difinative diagnosis at an earlier stage.  So trials or no trials it is up to you.  I know that the Parkinson's research is looking to expand to include atpyical Parkinsons too,  What clues are discovered in any of these related diseases will also help us.  

If you are entering a study because you want to take some ground breaking medication to reverse your disease I would caution you against it. As you know MSA still is in a stage where your diagnosis is "probable" or "possible"  depending on how many of the symptoms are happening,  and at this point the one thing we know for sure is that having MSA does not leave you with a lot of time.  I choose to use my precious time with my family and friends, I ditch anything that feels like I have to do.  I meditate and draw every day, and I continue to write.  So find your bliss and live each day to the fullest!  

Cathy Pfeil

Thank you Cathy, you are doing great!