Undiagnosed

since 2018 I have been diagnosed separately with most of the symptoms of MSA, plus other disorders but no body has mentioned MSA. I am seeing a neurologist for balance, tremors and falls and been told it’s probably not Parkinson’s and had an MRI scan but just been told nothing unusual is showing, and will discuss the scan when he sees me in about 4 months.

should I mention MSA to him, my experience is that medical professionals don’t like interference from patients.

[diyducky]

There are a few different Neurological Conditions that share similar symptoms. Many people on this forum are initially diagnosed with one thing and then further down the line told that it is probable MSA. My husband was initially told he had Cerebella Ataxia. When you are at your appointment maybe it would be worth asking if the clinician thinks that MSA could be a possibility and just see what they say.

Kind Regards

Lorna

[chester2107]

it took a couple of years for my dad to be diagnosed with MSA , he didn’t have any other issues beforehand, and was just told there was no cure for ut , he was 79 so had been perfectly healthy before

it is pretty hard to say definitely that it is to be honest and parkinson’s etc are very similar

xx

[Ruffner]

An MRI is usually normal with Parkinson's and atypical Parkinson's diseases. A DaTscan is usually done to help diagnosis and will be abnormal in both Parkinson's and MSA but can't distinguish between the two. You might ask for a referral to a Movement Disorder Specialist. In our search for answers, we consulted several neurologists who were not able to diagnosis. We asked our primary care doctor to refer to a MDS and my husband was diagnosed with probable MSA on his first visit. It's a very difficult diagnosis.

[Hidden in reply to Ruffner]

Thank you for that info

[Lincsoldbird in reply to Ruffner]

Hello RuffnerCould you tell me what an MDS is please, it sounds like it maybe another avenue to explore.

[Helenhooter]

Hi

I've still not been diagnosed but I'm getting closer. In to have a DAT scan next week. My third neurologist thinks it's possible MSA but says it may be CANVAS the scan should help?

Good luck

H

☺️

[Hidden in reply to Helenhooter]

You too 👍

[esj20 in reply to Helenhooter]

Hi Helen

it was my DAT Scan that gave me the working diagnosis of MSA.

Wishing you all the best.

Yours

Alec

[Monkeyfeet1 in reply to esj20]

Should I ask for a DAT scan? Or go off the MRI?

[esj20 in reply to Monkeyfeet1]

I cant reall;y answer that one as it was my consultant who organised this but, it confirmed my working diagnosis of MSA

Yours, Alec

[Cat-gal]

So what if they don't like it? It's not them that's going through it so go for it. My husband was initially diagnosed with Parkinson's but his geriatrist had some reservations because of the relatively quick way he was deteriorating and has now diagnosed MSA.