My neurologist at Mass. General thinks I have MSA. Looking for someone with this diagnosis.
Never heard of that!
I have had CA now for about 6/7 yeaars I have an annual visit with the Neuro at a specialist Ataxia centre and the two Neuros I have seen both mentioned MSA. Howeever when I went to aa local MSA meeting the MSA nurse there didn't think I had the usual symptoms so I don't know where I fit in. When I mentioned the MSA connection to the latest Neuro,he just said there were elements of MSA. My symptoms have beeen rapid and no genetic link has been found.My autonomic system has been tested for the last 6/7 years and nothing found so I am very confused. I am 53 now and live in the uk.I have tremors now,only recently started and have focus problems as well as extreme difficulty speaking and no indepenndent mobility but I think although it is an Ataxia of some sort it isn't MSA.There are quite a few of us unknowns so that is my muddled history..
Hello Debora. I was diagnosed with MSA in 2002. It frightened the life out of me! I was told to expect a 5 years life expectancy. Thank goodness they changed their diagnosis to CA when I didn't die! You must be really frightened, but there is hope that you have been misdiagnosed like me. As I understand it to have that diagnosis you need to have CA and either Parkinson symptoms or Autonomic symptoms. There is a test, sounds uncomfortable but it isn't, they test the muscles around your Anus. They can't tell you that you have MSA but can definitely tell you if you haven't. I refused the test because I didn't fancy someone messing with my bottom, but when I agreed to the test, it was not a problem, if somewhat embarrassing! The only other experience I can share is that the MSA chat rooms are very depressing, I had to stop looking at them because I found them very upsetting.
I did a little research and you haven't mentioned any of the symptoms for MSA. I am 58 with CA. If I were in your shoes stick with the good old CA and be happy. The other sounds very depressing.
Randy
Hi Debora,
I have OPCA I had a MRI done and my neurologist diagnosed olive pons cerebellar atrophy. I found what caused my OPCA thiamine deficiency through a Spectracell Blood test. I was treated some 20 months ago that slowed or stopped
my progression because I have no new symptoms and the symptoms I had improved. The symptom I have now is balance
and gait disorder due to my cerebellar atrophy. Here is a PubMed report on the susceptibility of the cerebellum to
thiamine deficiency. http://www.ncbi.nlm.nih.gov/pubmed/16527765 Note the word prolonged I had mine deficiency for over 16 years.
If you have Parkinsonism symptoms and are given Levedopa and the drug does not help the Parkinsonism than it can be a sign of Multiple System Atrophy. MSA can currently only be diagnosed on autopsy. Neurological diseases are complicated, I myself would have a hard time accepting a diagnoses of MSA because there are likely a lot more unidentified genetic ataxia’s out there as a likely cause.
I have been diagnosed with sca caused by cerribellem atrophy or multi-system atrophy!
Steven M. McVicker said:
I have been diagnosed with sca caused by cerribellem atrophy or multi-system atrophy!