The Orthostatic Tremor Forum (archive)

Hi to each and everyone of you who have brought back my sanity and faith in human nature.

I have been an OT sufferer for about 15 years, but have never been diagnosed, although I have had many tests, I understand the difficulty in reaching a conclusion because I usually look quite well, and manage for some reason when seeing medics to be able to remain steady (like the dentist I suppose). But all my symptoms are exactly the same as others on this site ie; only being able to stand steady a short while, when forcing myself to stand, sticking to the spot, not being able to manoeuvre around crowded places or small spaces, moving away when someone wants to chat in the street.

My mother who died in June 2004 aged nearly 89 had OT also (not diagnosed) she probably started at a much later age than myself around 70's she just put it down to old age and would not be investigated, I wish I had found this site when she was alive just to have been able to try and help her quality of life as she was housebound with this complaint in her later years.

I suppose now I know what it is I should return to my GP and get a referral to hospital, but the last time I went I saw a doctor of general medicine who told me to strip off to my bra and pants (not a pretty sight) and then was told there was nothing wrong with me, so I have struggled along ever since. I also paid privately to see a neurologist and had some tests done including a brain scan and electrical tests on my legs, but still no diagnosis although it is some while ago since I have seen anyone medically.

The heaviness in our legs that some of you explain about I find worse when coming out of water for some reason, if I go swimming or manage to get in the sea my legs are like dead weights and have to rely on my husband to help, the swimming itself is not a problem just getting out of the water, therefore like everything else we avoid it.

Once again I cannot thank you enough for this site and can only hope like everyone else that modern technology will find a cure, ironic really when I actually work for the NHS!! By the way just out of interest my age is 59.

Hope to hear from any other OT'er.

Pat

I'm new here too. There are medications that can help OT. Have you tried to get a dx? Or are you in a situation where you can't get to a mvmt disorder clinic? My OT is extremely debilitating and I couldn't function without meds. From what I've read there is quite a variety of responses to different meds. I suspect OT turns up in our lives through any one of a number of chemical malfunctions in our brains. Well at least you found some mates to help row the boat!

Hi Joya

Thanx to this site I thought my boat did have a hole and was sinking fast but now I feel more buoyant!!

What is a dx? We live in the dark ages here in England especially about OT so any information would be much appreciated.

Thank you for your response

Pat

A "dx" is a diagnosis. I would say something like: "I was dx'd in 1996 with PD (Parkinson's disease)". There is an excellent website for neurological disorders run by MGH called "braintalk" the website is http://www.braintalk.org but it crashed a week ago and the webmeister John Lester is scrambling to get it up an running. It will be down for probably another week. I have used the PD forum there for the last 2-3 years and it is very similar formatt to this one so I feel pretty comfortable here. the MGH website crashed before I had a chance to see if there was any info on OT there. I will look once John has it up and running again. Gloria is probably aware of it and may know if it has an OT forum. It's a huge website and gets a lot of hits because it's so easy to find. I think Gloria is a Goddess for setting up this website. The info and support that you get can be invaluable -I know I'll sure use it. ...J

Dear Pat: I know how difficult it is to find a doctor who can diagnosis OT, for years I have heard this from so many sufferers of our disease. In my own history as I stated on my Experience with OT page I too was misdiagnosed with Parkinson's. Your latest experience with a GP was a real disaster and I know you will not be going there again! However, I do have a wonderful resource for you to contact if you wish to be properly diagnosed. It is in England and that would be the National Tremor Foundation at Harold Wood Hospital (DSC) , Gubbins Lane, Romford, Essex RM3 OBE ----Telephone 01708 386399----email:tremorfoundation@aol.com I'm certain that they can provide you with the name of a neurologist that can diagnosis your case.
Good Luck and keep us posted, Your OT Partner, Gloria, USA

Hi Gloria

Just a big thank you for this setting up this site, I do feel more relaxed just be being able to put a name to my symptoms.

I will email the National Tremor Foundation for the name of an appropriate Neurologist in my area and will let you know the outcome. Although I should go back to my GP and ask for a referral to a "good" neurologist in the NHS.

Kind regards

Pat