Christel, BC, Canada

I have been reading your website since July 2004 and it was such a relief of finally find other people in my situation.  I think I have been suffering from OT for about 7 or 8 years now but only became quite noticeable about two years ago.  I always wondered why my legs would shake when I had to stand in social situations or at work.

About a year ago I finally asked my Doctor about my balance problem and shaking legs and he referred me to a wonderful neurologist in Vancouver.  He did a variety of tests and told me it wasn't in my head and I definitely had a balance problem.  He mentioned I had an orthostatic tremor at that time but I did not realize then that it actually was a condition.  After 6 months and a battery of tests including a MRI  I was referred to a specialist at the University of British Columbia at the Parkinson Research Centre. He and his various other doctors I saw explained that I did indeed have OT but it was very rare and research was still being done.  I almost felt relieved because I finally knew I wasn't crazy and I actually had something wrong with me. I found your website the next day and it was exactly what I was experiencing.  I started on a course of Clonazepam and worked up to 2 pills twice a day.  I was quite drowsy for the first while ( my boss was getting quite worried about me) but I soon levelled off  and got on with my life and work.  I try to exercise as much as possible. 

My job is quite physical and I stand all day but fortunately I am able to lean most times so I can handle it.  Some of the other jobs I used to do I had to give up but on the whole my work place has been very understanding.  I work in a fruit packing house and fortunately do get a few months off a year.  I also am an avid gardener and find I can handle most of it but I had to adjust quite a few of my garden beds so I can reach them.  I tend to use a small stool at times to take the pressure off my legs.  Bending over weeding for long periods of time is becoming harder to do so I will have to adjust as need be. I tell people that I have a balance problem and most are very helpful by lending an arm or finding me a place to lean or sit.  Standing in lines are the worst, especially  at this time of year, in stores.  Also stand up social events which I tend to miss.  My husband is really great and always there when I am having a bad moment.  Sometimes my legs shake and even ache very badly.

On reading your website today I notice Gabapentin was mentioned.  I have been taking it for about two weeks now after an incident with a severe back spasm which somehow caused a numbness in the upper part of my right leg.  I had severe pain in the leg until I took the Gabapentin and so now all I have is surface numbness  but also to my dismay a disminished amout of power in my leg.  My Doctor today finally said I should see my specialist again..  Thank God as I have felt in limbo for the last while.  No specialist mentioned a followup as if there really was nothing they could do. The two drugs I am currently on don't seem to help my tremor much but I am afraid to stop the Clonazepam in case it is acutally stopping me from getting worse. I a 54 year old female and live in British Columbia, Canada. I just wish I  knew more about why I have this and if I will get progressively worse.

Thanks. Christel, Canada