Hi Teresa! You are not being negative in pointing out that treatment for MSA may or may not improve the quality of someone’s life but not necessarily the quantity of his or her life. That is also true for Parkinson’s Disease. That is why it is so important that all of us sign up for research studies so that a treatment can be developed that slows the progression of the disease and not just treats the symptoms. I don’t want to see another generation go through what we are going through.

Teresa I am glad you are home and you have escaped dialysis. It. makes me sad that you sound so lonely. Knowing your strength you will rebound but know you have a friend in me.
🌈TheaD

Ron5, I have the same symptoms you are describing. C/l has helped with my tremors and balance, but the constipation, urinary incontinence, swallowing problems, and REM sleep disturbance have worsened. I have a visit with my PD/ movement specialist in a couple of weeks and will have to ask about MSA. It will be strange rooting for PD 😂

Good question Teresa and thanks for asking it.
The neurologists I have seen seem to have little interest in a specific and final diagnosis. In large part, I think this is because there is no approved and accepted standard for diagnosis. At this time, PD seems to be a category for a broad set of symptoms. A diagnosis seems to be a bit of a formality and helps with health insurance coverage and requests for services such as PT, OT, speech, etc.
Maria

Great question Sue. This is the definition I found on Google for MSA.
Definition. Multiple system atrophy- parkinsonian type (MSA-P) is a rare condition that causes symptoms similar to Parkinson disease. However, people with MSA-P have more widespread damage to the part of the nervous system that controls important functions such as heart rate, blood pressure, and sweating.

Given the many symptoms seen with PD, I can understand how it might be difficult to make the MSA vs PD diagnosis. I imagine the challenge is enhanced by the fact that often the PD diagnosis is initially determined symptoms.

Thanks for expanding my knowledge Sue.
Maria