👋 everyone, hope you're all as well as can be expected and looking forward to Christmas.Please can I ask if anyone attends a Specialist MSA Clinic & whereabouts are they in UK? Also, should suspected MSA cases be referred to such Clinic as a matter of course?
The reason I ask is that a "general" Neurologist diagnosed me with MSA-C in Nov '22 and referred me to the same hospital's "specialist" Neurologist in the Movement Disorders Clinic saying there was "no point" going to London now. Having waited 10 months to see said "specialist" Neurologist, I've had to undergo another MRI scan, plus have a DATScan, & yet more genetics tests. Followup appointment is in Jan '24 for findings!
I ask as he said at last appointment that it might not be MSA- my husband, looking for anything positive to cling on to, said that's good news then is it? Neurologist replied, no not necessarily so!
Am requesting for more info about the Clincs as maybe I still need to attend one?! Or if not satisfied with this Dr, I may request going elsewhere! Your thoughts appreciated - thanks 😊
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Frenchoak
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There are Ataxia/MSA clinics at UCLH Queen Square and Sheffield Hallamshire Hospital. Both are excellent but you should also contact the MSA Trust to see if one is near where you live. They both provide 6 month reviews after your initial appointment
Think it was the London one 🤔 that the 1st Neurologist was going to refer me to, then said no point going, attend movement disorders clinic instead! Do you attend a specialist clinic? 🤔🤔
If my memory serves me right, you’re nearby in Bristol. I, too, have been discouraged from going to London’s NHNN. My local neurologist is hopeless! I’ve been advised by MSA Trust to go to Southampton but that’s still a bit of a trek! Happy to ‘ speak’ privately. Xx
Thank you, yes I'm near Bristol. You've got a good memory 👍🙂I just wondered 🤔 if we get better attention at a Specialist Clinic rather than being lumped in with other conditions ?! I'd like to talk to a Dr that really knows about MSA and its implications . although I've read up on every scrap of info, research, trust info etc that there is! 😳
I find the treatment at the MSA clinic of the National Hospital for Neurology and Neurosurgery (Queen Square, London) very supportive and knowledgeable, but don’t be beguiled by the thought of 6 monthly appointments - they usually turn into a 9 month or more wait (due to volume of work I imagine).
Had my follow up clinic appointment early January, the Movement Disorders Clinic Neurologist that i saw doesn't seem to think I've got MSA-C now as 1st Neurologist thought, but definitely a Cerebellar Ataxia. This is of unknown cause so I think 🤔 I'm awaiting some further genetics results and then if they're negative for a cause, he's going to refer me to Sheffield Ataxia Centre as he said the waiting list is not so long! I'm now completely confused by everything , having been told I do have MSA-C and now possibly not! Don't know if I'm coming or going really !! People are saying to me does it Really matter what it's called or which gene is faulty, is it worth the hassle of going to Sheffield, but I feel I want to know what it is! Likely I wouldn't get holiday insurance now as recent Dr's letter state Cerebellar Ataxia - under investigation . I'm so confused at moment 🤔🤪🤯🥴 thanks for asking after me 😀
Nice to hear from you! my husband says it doesn’t matter what it’s called but I want to know. I hope you get answers soon! Do you mind me asking where you saw the movement disorder specialist? X
Oh dear, nor mine....I can no longer go out independently, which is a right pain, having to rely on someone else to go with me! I just want to walk around block, not far, but the risk of my falling over is just too much! You sounds as frustrated as me with it all! It's not fair is it? 😡😡🤬🤬😢 take care 😊
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