MRI Scan not showing up MSA - Multiple System A...

Multiple System Atrophy Trust

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MRI Scan not showing up MSA

Bamboot profile image
10 Replies

Husband had a mri scan doctors are saying results not clear for MSA is this normal! He had an abnormal Datscan when he was originally diagnosed with Parkinson and Lewey Body Dementia. After seeing a fellow consultant for brain disorders he organised various scans one being the MRI brain scan. We now are wondering is it Parkinson or MSA !

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Bamboot profile image
Bamboot
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10 Replies
Frenchoak profile image
Frenchoak

Hi Bamboot, such a chaffp getting a definite diagnosis isn't it. I was told I've got MSA-C in November 2022. Now, another Neurologist has said probably not MSA-C but something else but not sure what is yet causing my Ataxia symptoms 🤔 😳 I think MRI scans show a "hot cross bun" sign with MSA, mine doesn't. I've also had a DATScan which I think is used to confirm Parkinson's. Looks like we both just have to wait & see, but in the meantime it's very hard to plan or to get on with your life. Take care 🙂

Bamboot profile image
Bamboot in reply to Frenchoak

Hi there Thankyou for your reply, yes they do say about the hot cross bun thing. His Datscan did show up as Parkinson’s and Lewy body dementia. But he has several of MSA symptoms such as coat hanger neck and shoulder pain, REM sleep and not able to turn his self over in bed as well as postural hypertension ! So I don’t know ! He is seeing a neurologist in June so we will be waiting like you. Yes it is hard cos he’s been like this for about 5 years. Take care

esj20 profile image
esj20 in reply to Bamboot

So sorry to hear about the time you and other s are having to wait for a working diagnosis. I was fortunate as my DAT scan showed signs consistent with Parkinsonism’s them my neurologist, consultant and my MSA nurse jointly agreed on a MSA working diagnosis.

I had / have all the symptoms you described but fortunate as it took 7 months from my first visit to the GP about my concerns.

Never stop asking, the keep on pestering them and repeat!

Yours

Alec

Derkie54 profile image
Derkie54

Hello,

We were told some time ago that there were no definitive tests to confirm MSA and that it was down to the experience of the neurologist. I think our neurologist did a table tilt test and various others for my wife and then came to the conclusion that it was probably MSA.

Years ago we were searching for a label, first it was pointing towards MS, then after a while PD and since 2016 MSA is the diagnosis.

Now we are not worried about the label, L does not take any meds for MSA and we just do what we can. L does not have any tremors that are normally associated with PD

Bamboot profile image
Bamboot in reply to Derkie54

Hi there Thankyou for your text, I said to my husband today not to worry it is what it is. He has the symptoms of MSA coat hanger neck and shoulder pain, low blood pressure when standing and gait walk. His Datscan showed areas of his brain which is usually associated with Parkinson’s and lewy body dementia. Which ever, it’s not good ! Keep on going and take care .

SRUE profile image
SRUE

My husband's MRI showed "normal wear and tear" according to the neurologist. He has since had a DaT scan which was abnormal and has been diagnosed now with MSA-C. His original diagnosis was Idiopathic Late Onset Cerebellar Ataxia, a year ago.We have had to fight for a diagnosis and support for 4 years now.

I sincerely hope there is soon better recognition and diagnosis!

Reader103 profile image
Reader103

Hi, my MSA was diagnosed after a DAT scan. However I don’t think there is any definite scan that gives 100% diagnostic results, it tends to be diagnosed by the lining up of many different symptoms

SamanthaMSAT profile image
SamanthaMSATModeratorStaff

Hi Bamboot,

An MRI scan is often normal in MSA. It may show some cerebellar atrophy (shrinkage at the back of the brain) or a "hot cross bun " sign which helps with the diagnosis, but we don't have a difinitive diagnostic test for MSA, which is why it takes time to get the diagnosis. An MRI can rule out several other conditions, so it is still helpful.

DAT scans can also be helpful with the diagnosis as they show levels of dopamine, which are significantly lower in Parkinson's. We use a combination of specific criteria in clinic and scans to rule out other movement disorders.

Kind regards,

Samantha, MSAT nurse specialist.

Bamboot profile image
Bamboot in reply to SamanthaMSAT

Hi Samantha

Thankyou for your reply I don’t want my husband to have this awful disease but not knowing is worse. The scan said:

There is prominence of sulci and ventricles in keeping with global cortical atrophy, which is perhaps slightly more pronounced than expected for age. No medial temporal atrophy or other specific atrophy pattern. Mild cerebellar atrophy.

There are areas of encephalomalacia in the left temporal lobe and left inferior frontal lobe. There are a few punctate white matter hyperintensities which are of presumed vascular origin, and consistent with mild small vessel disease. No other parenchymal abnormality; no signal changes in the pons.

TK-67 profile image
TK-67

As with others here, we were told there was no definitive test for MSA. Mum was initially diagnosed with PD - from symptoms. MSA came years later again from her symptoms - very similar to your husbands. Is it worth trying to find an MSA specialist - what's important is being able to manage the symptoms as well as possible. Is your husband being treated for PD - the drugs given for this can often cause more problems than they solve.

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