Posts - Multiple System Atrophy Trust | HealthUnlocked

Multiple System Atrophy Trust

1,867 members•1,506 posts

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What is wrong with me?

I’ve been ill for one year. Started with insomnia and daytime grogginess to the point of stupor. In the past year I have had various add on symptoms. (Taking...

I’ve been ill for one year. Started with insomnia and daytime grogginess to the...

•4 days ago

Lots of research going on down-under

“Scientific breakthrough on brutal brain disease”...

“Scientific breakthrough on brutal brain disease”...

•4 days ago

Parkinson's breakthrough

Undiscovered cause of Parkinson’s found for first time by scientists in huge breakthrough - The Independent https://apple.news/ApxDeIPGtRsaW3LX6FeAW0Q

Undiscovered cause of Parkinson’s found for first time by scientists in huge bre...

•5 days ago

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Chuckle time

A cat died and went to Heaven:God met the animal at the Pearly Gates and said. "You have been a good cat all of these years. Anything you want is yours for the...

A cat died and went to Heaven:God met the animal at the Pearly Gates and said. "...

Paul_and_Sue_Wood

•6 days ago

where to go from here?

hi this is my first time posting. I care for my mum who was diagnosed with MSAp about a year ago. She was being treated as a Parkinsonism patient for 18m prior...

hi this is my first time posting. I care for my mum who was diagnosed with MSAp ...

•7 days ago

GI problems——how do you eat?

Is this normal for MSA patients because of dysautonomia (or possibly ataxia)? Have both starting around 2015. I’m sure it’s not easy with MSA but when or...

Is this normal for MSA patients because of dysautonomia (or possibly ataxia)? H...

•8 days ago

Oximeter Readings

What numbers do MSA patients typically get on Oximeter at night and during the day. I’ve been getting a lot of 94-95 readings. Thoughts?

What numbers do MSA patients typically get on Oximeter at night and during the d...

•9 days ago

Skydive

I was diagnosed with MSA two years ago. I am still mobile and in order to raise funds for the MSA Trust, I will be doing a Skydive on 10th May’25...

I was diagnosed with MSA two years ago. I am still mobile and in order to raise ...

•10 days ago

Blood pressure

Does anyone with MSA have experience with blood pressure being high with lying, sitting and standing? Going up higher as you proceed from sitting to 3 min...

Does anyone with MSA have experience with blood pressure being high with lying,...

•14 days ago

Chuckle time

One day in the Garden of Eden, Eve calls out to God."Lord, I have a problem!" "What's the problem, Eve?" "Lord, I know you created me and all of this beautiful...

One day in the Garden of Eden, Eve calls out to God."Lord, I have a problem!" "W...

Paul_and_Sue_Wood

•15 days ago

Short introduction

Hello, Thank you for accepting me on this forum. My husband has recently been diagnosed with MSA, after an initial diagnosis of Parkinson's Disease and...

Hello, Thank you for accepting me on this forum. My husband has recently be...

•17 days ago

Wheelchair Accessible Vehicle and wheelchair size.

I'm after some advice regarding a wheelchair adapted vehicle and wheelchair please. My wife is using a standard wheelchair at the minute but we're expecting...

I'm after some advice regarding a wheelchair adapted vehicle and wheelchair plea...

•19 days ago

Flying with walking poles

I have MSA and have found walking poles to be helpful with my terrible balance and slow, shuffling walk. I’d like to take the poles with me when I holiday...

I have MSA and have found walking poles to be helpful with my terrible balance ...

•21 days ago

Others experience

Sorry to post given everyone here is going through this but I just wondered about others experience. MiL diagnosed 4 years ago. Despite upping meds etc she is...

Sorry to post given everyone here is going through this but I just wondered abou...

•25 days ago

Breathing

Does anyone have inspiratory sighs? Tell me how you know if your breathing is going south. If I understand it the message from the brain is faulty in...

Does anyone have inspiratory sighs? Tell me how you know if your breathing is ...

•29 days ago

Sunday chuckle

I went to tesco today and I have to tell you this story:I was behind a grandfather and his badly-behaved grandson. He has his hands full with the child...

I went to tesco today and I have to tell you this story:I was behind a grandfath...

Paul_and_Sue_Wood

•29 days ago

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I passed out!

What could this be? We are awaiting delivery of our WAV van but today as it’s so sunny i wanted to go out. We had a nice afternoon out. But I had trouble...

What could this be? We are awaiting delivery of our WAV van but today as it’s so...

•30 days ago

Chuckle time

A Vicar entered his donkey in a race and it won.The Vicar was so pleased with the donkey that he entered it in the race again and it won again. The local paper...

A Vicar entered his donkey in a race and it won.The Vicar was so pleased with th...

Paul_and_Sue_Wood

•1 month ago

Orthostatic Intolerance

I had a Autnomic Reflex Screen in 2008 which showed b/p drop, but all the other things looked okay so it was dxed as orthostatic intolerance. Flash forward, I...

I had a Autnomic Reflex Screen in 2008 which showed b/p drop, but all the other ...

•1 month ago

The CUE1, created by Charco Neurotech, is being used by former BBC technology correspondent Rory Cellan-Jones

I've been reading some articles about this piece of equipment that you stick to your chest. It's supposed to help with freezing in Parkinson's patients. I was...

I've been reading some articles about this piece of equipment that you stick to ...

•1 month ago

Central Sleep Apnea

Have any of the patients here been diagnosed with Central Sleep Apnea? Is it part of the REM Sleep Disorder? How is it addressed? Thanks

Have any of the patients here been diagnosed with Central Sleep Apnea? Is it pa...

•1 month ago

Self propelled wheelchair

I got self propelled wheelchair off NHS find my hands really sore today trying to work it am I better with motorised one can anyone help please

I got self propelled wheelchair off NHS find my hands really sore today trying t...

•1 month ago

Hi…I’m Linda 👋

I’ve been searching for answers on HealthUnlocked for many years. First in Parkinson’s and then Ataxia groups. Now MSA because recently was told I have...

I’ve been searching for answers on HealthUnlocked for many years. First in Parki...

•1 month ago

chair back pain

now I have chair back pain-used a TENS unit, and only helped for short time-any suggestions- PT? Debbie

now I have chair back pain-used a TENS unit, and only helped for short time-any ...

Blanchedevereaux

•1 month ago

Newly diagnosed.

Like a lot of people, my wife was diagnosed with PD 18 months ago but didn't respond to medication and her mobility declined quickly so she's just about...

Like a lot of people, my wife was diagnosed with PD 18 months ago but didn't res...

•1 month ago

Diagnosed with Ataxia—Dysautonomia in Nov. Now What?

I was diagnosed in 2021 with ataxia and recently with dysautonomia and autonomic neuropathy in feet and hands…one cold hand that freezes fast…..considering...

I was diagnosed in 2021 with ataxia and recently with dysautonomia and autonomic...

•1 month ago

Restless legs and nagging pain

Hi all, I have MSA and I suffer quite badly with RLS. Recently though, I’ve started to get awful pain along with the muscle spasms in my legs and feet....

Hi all, I have MSA and I suffer quite badly with RLS. Recently though, I’ve sta...

•1 month ago

What should be the most loving tribute to PSP, CBD and MSA Fellows?

What could be the most loving tribute to PSP, CBD and MSA people who leave this world ? Quotes, eulogies, and stories etc do serve as tributes. However,...

What could be the most loving tribute to PSP, CBD and MSA people who leave th...

•1 month ago

Double chuckle time

A sweet grandmother telephoned St. Joseph 's Hospital.She timidly asked, "Is it possible to speak to someone who can tell me how a patient is doing ?" The...

A sweet grandmother telephoned St. Joseph 's Hospital.She timidly asked, "Is it ...

Paul_and_Sue_Wood

•2 months ago

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Chuckle Time

Wise nun 2 nuns went to shop at the market. They were taking so long so one said , Sister Mary it is getting dark and we are so far away from the convent. I...

Wise nun 2 nuns went to shop at the market. They were taking so long so one sa...

Paul_and_Sue_Wood

•2 months ago

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