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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