Confused 😕

[Frenchoak]

I've been wobbly since about 2019, when I also noticed my typing speed of 90 wpm slowing down and my writing become messy. I've been to a GP several times, before 1 took it more seriously in Nov '21. Cut a long story short, Neurologist said I had MSA-C November '22, but now The Brain Centre specialist Neurologist says it's not MSA-C! Diagnosis is Isolated Late Onset Ataxia, but all genetic tests/causes of the Ataxia are negative so he's now referring me on to Professor H. in Sheffield Ataxia Centre. I feel a bit confused as to what I've got now and it's future progression! Anyone else in similar situation 🤔 please I'd like to know. Thanks to everyone in this MSA group, you've all been so helpful and informative. I wish everyone the very best. Xx

[Monkeyfeet1]

Frenchoak it must be unsettling but there is hope. I have only heard good things about Prof H. Please let us know how you get on.xx

[Frenchoak in reply to Monkeyfeet1]

Thank you Monkeyfeet1. I’ve only just been referred to Sheffield and I’ve heard waiting list is about 8 months! So I’ll let you know when I hear any more! It’s the not being able to plan things for future that I hate! Will I still be able to manage getting abroad next year, will I be able to manage a river cruise, will I cope alright with a dog that I’d like etc. etc. Mobility has got (I think) considerably worse in past year, what will I be like next year? How are you doing anyway. Good, I hope. I’m currently in Woolacombe, Devon, lovely sea view apartment, but it is a place for walking and it’s too hilly for me!

[Monkeyfeet1 in reply to Frenchoak]

8 months is good! I have moved on to using a wheelchair. I’m sure Devon is fabulous ! Xx

[Paul_and_Sue_Wood]

Hi

Unfortunately MSA is a diagnosis by elimination and the symptoms can point at other diagnosis just as easily.

Take each appointment as a small step forward and keep focused on what you can do today because as you find it could change tomorrow.

We are all on the same journey but on different routes and timescales and there is no rhyme or reason.

Sue and I focus on what we can do and enjoy that and she is now doing diamonte art work which is placing a small diamante coloured gem on a picture like painting by numbers... And she shakes, it challenges her and rewards her.

What I am saying is don't let MSA run your life, enjoy your days by adapting and challenging MSA.

Paul and Sue

[Bamboot in reply to Paul_and_Sue_Wood]

Hi there I know how your feeling back in 2023 my husband has been suffering with symptoms which are postural hypertension, shaking, shoulder and neck pain, freezing, falls, not able to walk or do things for himself. He had a DatScan and saw the neurologist later in the year and was told it looked like Parkinson and Lewy body dementia. An appointment was made in jan 2024 to see the memory clinic. After several tests they said his memory test score was better than expected. Further investigation and talking to the specialist they said his symptoms were moving towards MSA but he was to have more tests to try and determine the diagnosis. One of the tests was a special MRI brain scan, he is waiting to go for a heart radioactive Scan. We had a letter from the specialist regarding the MRI scan saying it wasn’t showing the signs of MSA. I spoke to him to ask about the results he said carry on as before , he said my husband case wasn’t straight forward he also has diabetes and vascular problems. Everyone is different and can’t always be 100% clear on MSA. Hope this helps !

[Fatwallet]

Hi my husband was initially diagnosed with Late Onset Cerebella Ataxia 9 years ago but his symptoms became progressively worse, mobility, ( unable to walk within 3 year period) speech, coordination and was eventually diagnosed with MSA 6 years later. Take care, Shirley

[Frenchoak in reply to Fatwallet]

Thank you for your honest reply about your husband and sending you both my best wishes. My mobility has deteriorated in the past 12 months....last year I was managing 5,000 - 6,000 steps a day with a stick and independently, now I'm lucky if I achieve 1-2,000 & I hang on to someone tightly and still use stick! Have a wheelchair which means I can get about further with someone else and not hold them up! My writing is awful and difficult. ...my brain and hand do different things ! Organisationally I'm not so good, I'm muddled with appointment days/times etc and get stressed easily with too much going on. I get brain overload! My speech is also deteriorating (but I've done Voice Banking just in case it gets worse, or I find talking too tiring). These things are sent to try us, but I'm trying to live life as normal and do lots of holidays whilst I can! 🫣

[Morganthreewheeler]

My wife also suffered from dizziness, poor writing and slurred speech and after a brain scan was diagnosed with spinocerbellar ataxia

After 2 years she went to see Professor Hadjivassiliou at Sheffield Hallamshire hospital who diagnosed her as having MSA-C within 10 minutes and this was confirmed by a scan there next visit

The care at Sheffield is exceptional, you will be in good hands

[Helenhooter]

HiI have late onset ataxia. So far all the genetic tests have come back negative but I'm pretty sure my dad and my brother had it. They're both dead now. Still no true diagnosis but my dad lived until 94

H

😘💪

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