Saturday, September 13, 2008

A blank page in the diary of my life

In June my optometrist recommended that I referred to a neurologist because my eye tracking is slightly jerky and has been for at least a year (ataxia). He also asked questions like "Have you ever had a head injury?" - No, and "Do you have a family history of Parkinson's Disease?" - Yes.

I went to the doctor the next day and she wrote a referral letter. 5 weeks later I hadn't heard anything back from the hospital so I followed up. The doctor wrote another referral and got the practice nurse to fax it through.

On Friday I followed up again, 12 weeks after first being referred, a different practice nurse figured out that the fax was sent upside down, i.e. the hospital received a blank piece of paper. I don't know what happened to the first referral perhaps it was not the first time the nurse made this mistake.


Fortunately it is not something difficult to live with and a delay in investigating the cause is unlikely to make any difference to the outcome as the scenarios I know of are:
  • the ataxia will never be explained, it is just a mysterious quirk,
  • when I was born I received brain damage which was so minor that it has not been picked up until now (I was a difficult forceps delivery),
  • Parkinson's disease,
  • Multiple Sclerosis.
Unfortunately I have spent 3 months with the last two scenarios lurking in the dark corners of my mind. Parkinson's scares me less than MS. I know too many women who died in their late 40s/early 50s of MS. But, la la la la la, there is no point in worrying, la la la la la, I just need to wait and see, la la la la la, I've probably always been like this, la la la la la, think happy thoughts, la la la la la.


Ceridwyn said...

If it helps at all my uncle was diagnosed with advanced MS in 1973 and told he had 2 years to live. Last year he took gliding lessons and this year he spent four days trekking around Florence - my parents couldn't keep up with him.

And it is very scary - I hope the parts of the health system you need smarten up shortly and you get a diagnosis.

Fionnaigh said...

Scary waiting times really suck. Sorry to hear that you're going through that.

Let me know if I can do anything... I could try distracting you with coffee?

shonagon said...

I am worried and hopeful for you.

Anonymous said...


I'm thinking many good thoughts for you.