in March earlier this year I was diagnosed with Cerebellar Ataxia by a neurologist in Bath. She was very dismissive.
My GP, on request, referred me to UCLH. I attended yesterday and have been told that
Multiple System Atrophy is more likely. I have had lots of blood tests. Can anyone advise me on who I should see?
I get around the house with a rollator but use a wheelchair outside. I also have a scooter which is fine if I can stay on it. I have a stairlift and a chair for the shower.
My speech is poor. I cannot be understood on the telephone.
Written by
PaulaG3
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Hello Paula. So sorry that you need to be here but welcome anyway. I remember well when Jackie first got her diagnosis. It's all a bit of a shock, and you don't quite know where to turn.
The first bit of advice I think most people in this forum would give is to check out the MSA Trust web site as there's a host of information there. Don't be put off by all the symtoms that are listed - everyone's journey is different and hopefully you will only get some of them. Also it's well worth while talking to a MSA Trust nurse. They have loads off experience and will be very helpful.
There's so many people in this forum who have been through just the same issues as you and so please ask for help and advice at any time.
Hi Paula, I don't know anything about Cerebellar Ataxia, I do know about Parkinson's (my initial diagnosis) and MSA (my revised diagnosis,May 2022). You probably feel like I did,having had effectivly one misdiagnosis and had words like proable/possible/likely you want to see a specialist who can get it right and give you a definitive answer.
If that's what you mean by advice on who you should see then the answer from my own experience is "Other people with MSA". chatting on here or in person will fairly quickly illuminate whether you are in this unlucky club or not.
I also agree with Ian's comments, Joining the MSA Trust has been immensly helpful to me. Personally I also found some counselling helpful to cope with the emotional shock of being told the bad news, I spoke to counseller from the local hospice (self referral).
Dozens of questions, worries and thoughts will likely pop into your head in the coming days and weeks. As well as involving your GP and other professionals, and using the MSA Trust, you can always try asking for help on here. There are loads of us on the same journey !
Thank you Ken. You’re definitely right about speaking with others’ affected. Thank you 🙏🏼 the neurologist has sent off lots of blood tests to get a definitive diagnosis x
Hi Paula, We are in the US and here our best specialist for sorting out atypical Parkinson's diseases are Movement Disorder Specialists. We have centers of excellence scattered around the US. I don't know if you have similar specialties but a general neurologist in the US is unlikely able to sort this out (that has been our personal experience). We consulted numerous neurologists who could even diagnosis Parkinson's disease in my husband but when we finally got to a Movement Disorder Specialist he was diagnosed with probable MSA on the first visit. Hope this helps. Ruffner
Hi Paula. I'm sorry to hear your journey to get some answers is a difficult one. My husband's was the same. Ultimately it will probably be a neurologist who will diagnose you. If you are in the UK I really recommend signing up to the MSA trust and speaking to a nurse practitioner there.
So glad you reached out to the forum. It’s very bewildering when you are first confronted with MSA.
The reality of course is that you have been living with the symptoms for ages, only the name has changed. I too had a battery of tests at UCLH/NNH, but the stark reality is that there is no definitive test for MSA - only educated probabilities.
It sounds like you have some good adaptations already in place, so are probably in touch with your local authority OT. Definitely join the MSA Trust and their nurse specialist and welfare advisor will contact you with a wealth of information. The Trust’s MSA welcome pack and guide are also helpful.
My husband had several diagnosis changes over the last 9 years. They told him ''Not Parkinson's" but maybe "Essential tremor". I asked him to have a MRI because I thought he had a stroke from how he was walking, dragging one foot. Then a few years later, he did get diagnosed with "Parkinson's Disease. His swallowing started to "sound" very different, and he had a swallow study which he failed. Three years later, after more changes, he did have some tests that checked the boxes for MSA. (so it took nearly 6 full years to have enough changes to finally figure him out. )
They looked at his Autonomic nervous system functions, blood pressure changes from laying to standing, if he would sweat when warmed up, a bladder test for changes in "ability to go", (Neurogenic bladder) and another for his slurred speech. His hand grip remained strong for a long time, but now cannot control his fingers to hold a hand of cards or turn newspaper pages.
The changes have been gradual, and his mind is still all there but he says "it's slower". I was actually told you can use a neurologist, but you might want to find a Dr that will be easier to get into- when you have changes, so we have an Internist who helps us deal with the changes in all the different areas. (we did go to specialists for diagnosis of Neurogenic bladder, and saw a Gastroenterologist for his Feeding tube, and Neurologist.
Now as we meet people, I try to educate them on the NAME of the condition, how rare it is, what it looks like (different for each person) and that my husband is still very much able to make his wants and needs known, but it will take more patience to figure it out, from a spelling board, to a "help me" chart.
Keep asking questions Paula. There are more and more people who are figuring out the puzzle, to help people with MSA and those who care for them.
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Brother just beef diagnosed 
Diagnosed later in life
Diagnosed today … scared for the future! 
I hope this will help someone…
