Ataxia UK
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What will happen next as in the steps to take after diagnosis?


I am still waiting for feedback regarding the last MRI I had over a fortnight ago and have an appointment to see a doctor next week.  I want to know whether I inform them what I need, or the doctor will tell me or the Neurologist will?  I find that the lengthy time between meetings/appointments rather long and that's when the doubts and worries come creeping in and the need to talk to someone.  Also, what is it that I can do to help myself whilst I am 'waiting'?  Thank you.

3 Replies

Hi! Pgee ☺ I  can only say what happened to me.  My Nueorolgist told me, first.  Originally he deemed I had FA 😩 So it was a massive waiting game waiting for the tests to come back ~ it was about 6 weeks ~ I had a simple but very specific blood test and a really long MRI (45 mins) the result was~ genitic cause ~ Episodic Progressive Ataxia.  I  found researching the condition really helpful, I dedicated quite a few hours every day to research, I  found all my information online 😊 During all the research I decided for myself that I  did not have FA. I cannot tell you how shocked I was at to be told the outcome but at least I sort of knew what I was facing!?!?!?! Maybe you could try that?? Try not to think about the outcome too much but be ready ~ does that make sense??? I just kept telling myself "wait for the results to come in".  Good Luck with it all, whatever happens you'll be ok.  xo


Thanks joolzzz.   Yes you make sense!  Will be going to see the Doctor on Thursday re the MRI on the spine... Thanks again for your comments.


Hope you don't mind me asking but do you have seizures and feel drunk


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