I found out I had OT, but little else.

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

Post Reply
DaveW

I found out I had OT, but little else.

Post by DaveW »

I am 49 and was diagnosed with OT just over two years ago. When I look back, I have had the symptoms for at least six years and it wasn’t until I mentioned my difficulties to my employer, was I finally persuaded to see my doctor. At first my doctor did not seem interested, but it wasn’t until I stood on her scales did she suddenly sit up and take notice. “Oh no, that’s not right at all”, was her comment when the needle on the scales did it‘s own dance.

Fortunately the Neurologist she sent me to identified the condition and symptoms straight away as OT, but that was as far as her knowledge on the subject stretched. It is very clear now that she was confusing the treatment of OT with Essential Tremor and all the prescription and advice she gave did not make the slightest difference. The only good thing that came out of this visit was that I finally had a name for the condition and through this I found this forum, and a better understanding of what we are all up against.

After nine months of beta-blockers that did absolutely nothing but add the pounds, I have finally changed to Gabapentin, which I now take three times a day. My condition has worsened markedly in the last two years and now I can stand for only a few seconds, with only partial relief when sitting or walking. I can still remember the neurologist two year ago saying that this condition would not leave me ‘disabled’, how little she knew. :roll:

David
chrissie
Posts: 6
Joined: Mon Oct 23, 2006 12:30 pm
Location: portsmouth uk

Post by chrissie »

It does leave you disabled (as I am) but the sad thing is nobody understands because it is not generally recognised, if we said we had MS or Parkinsons people would be more tolerant. I gave up playing darts (obviously) for my then local and several unkind words were said about me.
Looking on the bright side it is not life threating! Good luck, with certain adjustments we can get on with life.
Post Reply