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.

Aaargh.

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.

4 comments:

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.

mkcs said...

*hugs*

I'm thinking many good thoughts for you.