How did your neurologist differentiate between the 2? I know this isn't an entirely Parkinson's question, but I would like to know if anyone else has been told it might be MSA.
Have you sought another opinion?Putting comments on a chart would be unacceptable to me. As my husband reminds me, I am little short (4’8” ))and puny( 92 lbs) but I AM LOUD! Be your own best advocate.
A DATscan won’t diagnose; but it will tell them if you are losing dopamine, which makes it Parkinsonism; if it shows your dopamine is intact then it is not Parkinsonism. When they diagnose Parkinsons with a DATscan, then you develop symptoms not found in PD, they look at those symptoms and try to determine which Parkinsonism you have; then the best answer you can honestly get is likely, the next best is possibly. Only after they autopsy a brain can there be a definite answer, and often they got it wrong, which isn’t to say you didn’t have Parkinsonism, it means you didn’t have the one they thought.
I have also, and I think that is correct. There arent many people who have MSA, so we should keep in touch. there isn't an answer to your question, per se....MSA is a type of parkinsonism. it isn't parkinsons in the traditional sense. For instance, I don't shake, not at all. However I also can no longer walk at all, so it's not really better or worse than parkinsons, just different, and its diagnosed with a nuclear brain scan.
My gait problems started with my neurologist whose practice was primarily devoted to headaches. She didn’t say anything about my walking bent over and frequent falls. So in the fall of 2019 I asked her for a referral to a different neurologist. It was that neurologist who diagnosed the NPH. I had to have a 3-day spinal tap in the hospital to be sure it was NPH. With each cup of fluid that drained out I walked more and more upright.
When the shunt was installed the incontinence immediately stopped but I still had balance problems and a slight tremor. That neurologist didn’t think I had Parkinson’s, but Parkinsonism caused by a lifetime of antidepressant and antipsychotic meds. I started weaning myself off them but there was no change. She gave me a referral to the Movement Discover Specialist who looked at my DatScan report and said definitively that I had Parkinson’s. He said the test would be if Sinimet improved my symptoms. There was a great improvement.
@A MyParkinsonsTeam Member, I have been diagnosed with “likely MSA”; a definite diagnosis cannot be made until autopsy of the brain. I told the doctor he’d have to wait on the autopsy; I prefer my brain as a whole rather than in frozen slices. He understands. It is a very complicated illness which affects the entire autonomic system. If you’re interested you can look up talks by specialists on YouTube and get firsthand information. I won’t attempt giving more info than that, but if you have questions please feel free to ask. I’m well into 40+ years dealing with PD symptoms, with MSA being more recent.
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