LOCA or MSA: Maybe my Late Onset Cerebellar... - Ataxia UK

Ataxia UK

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LOCA or MSA

klazien profile image
24 Replies

Maybe my Late Onset Cerebellar Ataxia is MSA? I don’t have the low blood-pressure problem and after 17 years am still alive but all other symptoms fit. In the past physicians only looked at blood pressure between sitting and standing but maybe things have changed?

24 Replies
wobblybee profile image
wobblybee

🙂 Do you still have reviews with a Neurologist

It could be worth doing testing again, if only to give you peace of mind

chelpet profile image
chelpet in reply to wobblybee

Testing meaning...?

klazien profile image
klazien in reply to chelpet

As far as I know, blood-tests do not show it

wobblybee profile image
wobblybee in reply to chelpet

Sometimes..if a person is Idiopathic, and there’s doubt about the exact diagnosis, symptoms may appear in later years that give a better picture. Or, in some cases, new research can help give an answer.

chelpet profile image
chelpet in reply to wobblybee

That is SO interesting. I have been diagnosed with Cerebellar Ataxia (ideopathic).

I am seeing my Ataxia Neurologist in November.

I'm really interested in the basis (research or otherwise) of what you said in your latest post.

wobblybee profile image
wobblybee in reply to chelpet

I have a diagnosis of Idiopathic Cerebellar Ataxia, and after my last round of testing, my DNA was stored to test against future findings. It could be worth asking your Neurologist what testing is available currently.

chelpet profile image
chelpet in reply to wobblybee

Thank you. My brother has the same Ideopathic diagnosis as me. Can I forward your comments to him?

wobblybee profile image
wobblybee in reply to chelpet

🙂 If you think it would be helpful..no I don’t mind

You’ll find this link interesting..

ataxia.org.uk/research-news...

klazien profile image
klazien in reply to chelpet

ok

klazien profile image
klazien in reply to wobblybee

Thank you, I’ll look into it.

klazien profile image
klazien in reply to wobblybee

My Neurologist in Cardiff seems to know a lot about Ataxia but I only speak to him by telephone once a year. These telephone appointments are on my request as they are only for monitoring.

My next telephone appointment is in December and maybe I should bring it forward. This will be difficult as Dr. Wardle seems to work in several hospitals. I could then request to have another MRI if possible but as far as I know, MRI’s are very expensive so there may be a reluctance

My cerebellum might shows some shrinkage, blood-tests would not show it and I had a thorough test for Parkinsons here in Bridgend which did not show me having it although I have all the symptoms of it.

For years I saw Dr. Giunti at the Ataxia centre in London but since we live near Bridgend in Wales the drive became too long so I switched to a Neurologist in Cardiff.

klazien profile image
klazien in reply to wobblybee

For years I saw Dr. Giunti at the Ataxia centre in London but since we live near Bridgend in Wales the drive became too long so I switched to a Neurologist in Cardiff.This Neurologist seems to know a lot about Ataxia but after one appointment the pandemic started and since then I only speak to him by telephone once a year. Since it is only for monitoring and there is no cure anyway, I don’t mind. Blood-tests would not show anything but maybe an MRI might show might show some shrinkage of the cerebellum, and I had a thorough test for Parkinsons here in Bridgend which did not show me having it although I have all the symptoms of it.

There is no cure for either LOCA or MSA so it does not matter anyway.

chelpet profile image
chelpet

Thanks!

I was going to say an MRI? But ....

Jingle1967 profile image
Jingle1967

I have the same. I’ve been diagnosed with idiopathic cerebellar ataxia, I’m 55, but the Neurologist mentioned MSA. Told me they have a good website. He told me nothing about MSA, just that they have a good website. I’ve since been told it’s not MSA by an MSA nurse and a different Neurologist. But my symptoms have progressed really quickly and now I have low blood pressure, I worry about it constantly.

klazien profile image
klazien in reply to Jingle1967

Years ago I was also told it was not MSA but then they only looked at blood-pressure. My blood-pressure is always low but without sudden changes. Nowadays they also know about MSA-C and MSA-P but it is still based on mainly anecdotal evidence. I only would like to know because of the heredity factor.

majajefferies profile image
majajefferies

Genetic testing for the genes which are faulty in ataxia patients, only a blood test.

PatsyIpswich profile image
PatsyIpswich

Due to us moving home, I have a new neurologist. I have a diagnosis of idiopathic CA and 79 years old but have been given two appointments for MRI scans so it's worth you asking. I did say 5 years ago, no mire tests but it will be interesting to see results of cerebellum and spine scans. X

klazien profile image
klazien in reply to PatsyIpswich

Next time I will ask for an MRI

ninotchka profile image
ninotchka

Interesting..... I too have that diagnosis, been genetically tested and the MRI shows cerebellar shrinkage as well. But I have HIGH blood pressure, which I never used to have. Maybe it's my faulty heart valve, though. All of this just happened in the last 15 yers, or it was was ever- so- gradually developing. It's all an unwelcome mystery.

klazien profile image
klazien in reply to ninotchka

There is a Msa UK organization and in order to pose this question I first had to register to be a member Which was not possible because after 17 years I don’t know anymore the date of my diagnosis of Loka.

ninotchka profile image
ninotchka

I live in California and belong to Kaiser. I m the ONLY patient in my area (San Rafael/Marin County/Northern California) with this disease! My neurologist is learning as we go. There is no specific clinic in the states for ataxia. I have a neurologist, a cardiologist, and a primary doctor here. There is a genetics Dept in Sacramento. Everyone is supposedly looped in.

klazien profile image
klazien in reply to ninotchka

Doesn’t the USA have a site called Internaf?Maybe it only caters for the east of the country but maybe it is worth looking into?

jeffwelsh16 profile image
jeffwelsh16 in reply to ninotchka

I have FXTAS and go to UCDavis in Sacramento. They may be able to help you

ninotchka profile image
ninotchka in reply to jeffwelsh16

That's good news. what do they do for you there? I've had Physical Therapy and want more, but they only allow so many visits.

I live in Sausalito, do not drive and would need to find a volunteer to take me. That is about 1-1/2 hrs away. I have some good friends but I wouldn't ask them to drive me.

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