Anyone with Parkinson Plus Syndrome (MSA)? You can message me if you prefer.

[tlongmire]

I had a Datscan recently that said I was Positive for Parkinson's. Prior to the Datscan I had been diagnosed in 2010 with Parkinson's. At my last visit with my Neuro which was also prior to the Datscan he said I had MSA.

I'm a little confused because it says on the Mayo Clinic web site. "Multiple system atrophy is so named because its signs and symptoms affect multiple parts of your body. MSA is classified by two types: Parkinsonism and cerebellar, depending on which types of symptoms predominate at the time of evaluation."

I've also read that many people are misdiagnosed as having Parkinson's because they

present with Parkinson's like symptoms. Since my diagnosis for Parkinson's has been confirmed through this new technology I'm wondering why my original Neuro is saying I have MSA.

[Espo]

There is a good article by NPF at

://parkinson.org/Patients/Pati...

which should be useful.

[tlongmire in reply to Espo]

I could not find the referenced article.

[shasha]

DEAR TERRI

Are we now saying that you dont have msa ? Gosh it is so confusing !!

[tlongmire in reply to shasha]

Yes, it is confusing me as well. I see my Neuro 2/21; I have not seen her since the Datscan was done. From what I've read people are often misdiagnosed with Parkinson's because it takes time for say MSA symptoms to show themselves. But the Datscan clearly shows I have PD so I am really anxious to talk to my Neuro about this.

[shasha in reply to tlongmire]

i bet you are - i know that pd is often dxd in the first insrance, as indeed i was as it comes along with all the same symptoms but to have it show up as a dx on a dat scan is very worrying indeed--- love to you and let me know if you hear of anthing else sharon

[Poss]

Neurologist #1 suspected that I may have MSA but a re-scan did not reveal the characteristic "hot-cross bun" sign which appears in the ponto-cerebellar part of the brain.

Neurologist #2 asserts that absence of hot cross bun sign does not necessarily negate MSA, but having said that, he continues to say that If my present condition (which started in 2014) is attributable to MSA, I should be in a wheel chair by now because the progression of MSA is rapid! There is no cure for MSA, generally thought to be fatal.

As you know, there are so many variants of PD. I have no tremors, but mw sense of balance is gone and my fingers and feet feel icy all the time.

My next assessment with Neuro #1 is on 6 March. Will keep you updated