Ignorant people say ignorant things. The best thing to do is ignore them and be the bigger person! If everyone would think before they speak, the world would be a much better place! Unfortunately, ignorant people didn't get the memo. These are my words of wisdom for Danielle...,ha! ;o)

Rose, Well said!


Thanks, Judita! ;o)

Hey Danielle, Not all docs are jerks, but many are. I sometimes think that the reason docs are at big famous university hospitals is because they totally lack bedside manner! You think your going to get superior care at these places, but you end up leaving feeling like dirt. Had one tell me he only dealt with much sicker people, so to come back once I couldn't walk at all or was aspirating!

And wait until you try to get two of these guys to speak to one another on the phone. Ain't happening! One explained to me that he didn't get compensated at all for time wasted on the phone.

Unfortunately, that is the hand we've been dealt. You can laugh about it and rant about it when it's driving you nuts. Or you can go ahead and let it drive you nuts. Often takes years to diagnose, and after more than 10 years of visiting docs, I still don't have a firm diagnosis.

This is a great place to learn and to rant and to laugh. Don't forget about us! Come back often. This isn't going to be easy.


You lot on here are bloody brilliant I came away from that place feeling like crap and now I’m not that bad thanks to all of you. Thank u x

when i was first diagnosed… i had the same symtoms… I had an MRI & a genetic planel (expensive blood test) done & it came back normal… i thought it was in my head… anyway after symptoms presested… I asked to see a specialist… I had a (contrasted) MRI… when they compared to two results… I was diagnosed with cerebellar atrophy with leasions causing ataxia of the spinocerebellar type… so no i dont believe its in your head!!!

Hello Danielle

Having any SCA in your family is horrid and it is only natural that you are worried. I would definitely go to your GP and get referred to the London Ataxia Centre
This tells you a bit about it.
Also if you have any questions another very good forum is run by the UK Ataxia Health Unlocked
Hope this helps : )