The first diagnosis

My previous blog ended: “I did not get back to them”, and I did not.

However, my mother did. In my medical record I found that exactly 2 years after my first visit, my mother called the clinic, worried about my deterioration. I was given another examination in October of 1989 and in the record I can see the professor’s words: “…at the exmination today, as previously noted, a dystonic cramp is observed… relatively distinct extrapyramidal symptoms…. dystonian in nature….”.

I was sent to a number of examinations: MRT, eye exam, EEG… My memory from this occassion is that the professor said that “well, now he could see that I did have some sort of neurological problem and it was probably something called generalised dystonia”. His assessment was that the symptoms were not difficult enough as to justify medication at this point. At my visit the day before my 20th birthday, he saw fit to give me my first medication and when starting taking it, I felt like a completely new person. For the first time in literally years, my body actually responded to commands, I could walk as a “normal” person. I felt strong, happy, I felt truly alive!

The initial boost-effect lasted about a week. The medication still had an effect though, it was just not as strong as in the beginning. I got on with my life, at the time being a student of chemical engineering, tried my very best to see the positive things in life. Which was actually not very difficult, seeing I was in love :-). I had just met the man who 17 or so years later became my husband (as well as the father of my child… although since that happened before marrying, let’s not make a big deal of that…). This was in the early days of the internet (yes, I am that old…) so I did my fair share of searching for information on this mysterious disease (a disease that for some peculiar reason responded positively to medication for Parkinson’s Disease… who would have guessed…).

Generalised dystonia was the first diagnosis I was given for what troubled me… but not the last.

The first meeting

I think I was around 13 years old when I first realised that my body did not function the same way as others’, I might even have been younger. I remember sitting on a chair in a school, community centre or something similar in the village of Ängersjö in the north of Sweden listening while my relatives played their dance music with violin, accordion and vocals. It might have been the winter break and my family were in Härjedalen. The music was good and people were tapping their feet with the rhythm. I tried to follow their example, but I remember my surprise when my ankle refused to respond. I did my best to hide it so that nobody would notice.

Years passed and more things were gradually added to the list of things I had trouble doing: Why were my wrists so difficult to move? Why did I sometimes find it very hard to balance my bicycle? Why did I have such a hard time at physical education at school? Why did I move so slowly? Why were my muscles so tense and refused to relax?

I think that subconsciously, I chose to cope with the non-compliance of my body by asserting myself intellectually. My mind could take me where my body would not. I read constantly, I read everything I could find and I read faster than anyone else.

When I was about 16, I met my first neurologist, an associate professor at the Karolinska Hospital in Stockholm. I requested my patient records a few years ago and they contain his assessment from June 9 1987: ” … . Referral due to tremor and balance problems … Assessment: hard to evaluate … Possibly a mild form of dystonia … not particularly alarming symptoms at present… Patient was instructed to contact the clinic if the problems would increase … “. I can honestly say I do not remember much of the meeting, but I remember the way the professor expressed himself, he said: “There is nothing wrong with you, your problems are psychosomatic, but please contact us if you get worse.”

I did not get back to them.