- This topic has 3 replies, 1 voice, and was last updated 8 years, 5 months ago by Kathy.
April 23, 2014 at 4:07 am #1272KathyGuest
My sister was diagnosed with Parkinson’s Disease a few years ago, but about a year ago learned she has MSA. She can no longer walk without help, has had many UTI’s,very low blood pressure, and has fainted twice recently. She also has problems with her bowels, speech and now has trouble swallowing. It seems she develops one problem after another. This disease is worst than cancer…she has her mind but not use of her body. She is 55 years old, way too young to be dealing with this disease. More research is needed. Does anyone believe this is caused by stress or some sort of traumatic event in their lives? I know there is no cure, so why if this disease is fatal don’t they have more research. The Parkinson’s medicine doesn’t even help, so she is now cutting back on the medication. And like I said, this is such a horrible disease much worst than any other disease and or sickness.April 29, 2014 at 11:31 pm #1273GaryGuest
Large studies (involving hundreds of people with MSA) have not found a common cause of MSA; environmental toxin (including well water) may be a precursor, but it begs the question why are not spouses, who have been exposed to the same, suffering from MSA, too? So far, no link to stress, though that has been suggested.
Research: Probably, what you said about research spending could be said of all rare diseases. I’ve heard, but I forget, the proportion of people with Parkinson’s to people with MSA. I know it’s huge. Usually research dollars are awarded based on the number of people with the disorder, not the severity of the disorder. There are exceptions, of course, but your point is correct — the millions spent on MSA research is nothing compared on the hundreds of millions spent on Parkinson’s, Alzheimer’s and other neurological research. Some day a cause/cure for MSA will be found; my hunch is it will be when cures for other neurological disorders are discovered.June 1, 2014 at 10:53 am #1274Debbie TempletonGuest
Hi Kathy, we are in Queensland Australia. My hubby 43 has just been diagnosed with MSA-P, he has very limited use on his right side. We are looking at a lot of alternative medicines as there is nothing to help from the specialists:( We are looking into bowen therapy, accupuncter, aqua formulas and cannabis oils and juice. People with MSA are getting good results with this. Better than trying nothing! Just not much positive out there!! Good luck with your sister, I hope to find people here in aus that are in our position and maybe help each other. DebbieJuly 31, 2014 at 4:54 pm #1275MichelleGuest
My husband has MSA and is in a terrible state. In answer to your question, we do believe it was caused by Lyme Disease. Yes, research is much needed.
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