My neurologist telephoned me yesterday with the news that the Ataxia genetic blood tests had finally come back after a three month wait, and that the results were negative for the common types of SCA.
I had really been looking forward to the results with the expectation that somehow I would know a little more about what is going on and that it would help me to cope a little better with the recent Ataxia diagnosis. It's almost as if Christmas has come and gone with no presents. I am now feeling a little lost and don't know what to expect next..
The hardest thing for me about being diagnosed with Ataxia has been the lack of adequate support I have had (or not had...) Also, almost all of the medical professionals I have dealt with have little or no experience of Ataxia, and while they have been friendly and have tried to help, I have felt they were doing too much guessing or presenting me with treatments appropriate for other conditions and not necessarily the right ones for my Ataxia. All of this has left me feeling quite vulnerable. I had really been hoping that the blood tests would at the very least give a pointer to what my future might hold.
All my life up to now I have more or less known what was going on and where I was going, but not any more. I now feel a little like the proverbial canoeist up a creek without a paddle, except that I also have no idea which way to go. And then, filled with trepidation about what I'll find when I get there - wherever that might be.
Apparently some people have been waiting for years to find out what caused their Ataxia so perhaps I shouldn't have been expecting much. What has your experience been? How long did you have to wait to find out, and do you have any suggestions for me?