Iwas originally diagnosed in 2008 now the drs want me to consider MSA…I am confused and worried…help!l
P
Multiple System Atrophy
In many meeting I have attended MSA Representatives have been present along with the many Ataxia / raredisease attendees.
Alan Thomas
I was diagnosed with MSA too but I have had two tests on my autonomic system and both were ok ie negative.
I think the neurologists are just stabbing in the dark.In my case it was making 2 and 2 and coming up with five.
Take heart.I was very confused at first. I think they do it routinely with some of us if they can't find a genetic link.
I was diagnosed about the same time aand I am still here.
I was diagnosed 10 years ago with Sporadic (idiopathic) Cerebellar Ataxia. From what my neurologist has said, 25% of people with this type of ataxia will develop Multiple System Atrophy (MSA). Typically, MSA is seen within 3 years of ataxia diagnosis, although my neurologist had a couple patents develop it 20ish years after. A symptom of MSA is a severe drop in blood pressure upon sitting or standing up, to the point where some people pass out (faint). My neurologist always tests my blood pressure when I see him. You'll find a lot of information regarding MSA on the net. Just "Google" MSA. Although it's hard, try not to worry as that doesn't help your ataxia. I always feel better when I educate myself with information. I hope you have answers soon! ;o)
Hi Rose
My blood pressure is always tested. It has always been low especially when I rise.I have never fainted but I do lose my balance easily when I rise.I think the Neurologist thought it might be MSA but it was a very peculiar sort.
I have had this since 2008 and the progression has been rapid.Before 2008 there was no sign.
Although MSA has been mentioned twice the Neuro is just as baffled as I am.He has since reverted to idiopathic CA.
Joehamed,
Rose is correct by saying that 25% of sporadic (idiopathic) Ataxia’s develop into MSA. I too have had my diagnosis changed to MSA from Sporadic Ataxia this past January. This was based on my blood pressure drop upon standing and the results of a PET scan which showed underactive areas in three parts of my brain. There is no test that will confirm MSA 100%, they diagnose it the best they can it this point.
While I agree getting information is useful, my neurologist warned me that the current information on line uses a life expectancy that is from data gathered when people weren’t getting diagnosed as quickly as many are today. He said he knew I would read it, but not to accept all the information as the final word. Since there’s little hope in the information available, I live every day to the fullest and hope for the best.
Hang in there, I know it’s hard. I recommend a support group meeting if you haven’t gone to one, they’re very uplifting!!
Kathy
Hi,
I was diagnosed idiopathic C.A. In march 2011. Towards December 2012 I deteriorated and after series of blood tests seeking a second opinion my new neurologist feels it is Progressive Muscular Atrophy. The ailments have several names exhibiting similar symptoms. So try to be calm and positive which is difficult but do we have any choice? My prayers and good luck to you.
MSA is an ataxia 'type'.
Please, acronyms are not all easily understood. What is MSA?
Multiple System Atrophy. (MSA)
My understanding is don't we all have some multiple things going on? I don't know one ataxic person to have just one. Maybe I'm wrong but??????
maryseas said:
Please, acronyms are not all easily understood. What is MSA?
Like you Marie, my blood pressure tends to be low, always has been (even before I was diagnosed with ataxia), although it's never caused me any problems. It doesn't drop when I sit up or stand up from a lying down position. It's just always low..., ;o)
Jeanne,
Yes we all have multiple symptoms going on, but MSA affects more parts of the brain than the cerebellum. Autonomic system is involved which regulates blood pressure, temp control, breathing etc. This is in addition to the ataxia issues.
Kathy