Follow up

Yesterday I had a follow up appointment with my neurologist. Going through all my tests, which have not revealed any answer, she put me through my paces and confirmed that things had progressed. She has referred me to neurophysio, but also asked if I wished to be referred to the ataxia centre in Queens square London. I am not sure about this as whatever comes from it will not make any difference to the outcome even if they do find a genetic link. I am to be followed up again in Feb after the physio and can be referred then if I wish. What are peoples experience of this and how long am I likely to wait for an appointment any way?

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Ok this is my take on things. We are all so different and what works for one does not always work.

I find neurologists (who generally are very knowledgable) do not always know you and how your body reacts. Listen and then decide what works for you.

I go annually for a check-up in London. I’m sorry but I do not know where you live. The journey is hard and takes hours. We used to go on the train but now we drive! Not easy when it rains and traffic can be terrible. I like to be on their books in case a treatment is discovered.

The annual tests are depressing and you know you are getting worse.

They often want me to try different drugs but they often do not agree with me. Find what works for you.

Good luck x

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Thanks for your input, I live in E.Sussex so it would be a bit of a trek maybe. Best wishes to you too.

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I would certainly be knocking on the ataxia centre door, luckily I have one 12 miles from me, it’s just nice to get answers, I’d say go for it, I waited 12 weeks for my appointment good luck keep us informed x

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Thanks for your reply. I think if I lived as close as you it would be an easier decision. I would like some answers so I have some thinking to do. Good luck to you to.

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🙂 The different Ataxia Centres have Neurologists whose particular interest may be in 'a specific type of ataxia'. Sometimes it's necessary to travel. My own local Ataxia Centre is only a few miles away but, my next review appointment is in London 🙂 Not ideal considering I live in Newcastle but, I can't see why I shouldn't follow it up 🙂 xB

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Thank you. You certainly have a way to travel. x

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