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

Moderator: gloria

#6417
Sorry that you might have to join our "group". If you don't get OT as a diagnosis, get another opinion, and another.It could be that it isn't OT, but I'd get the other opinions if necessary. Many physicians haven't even heard of the condition. It's a miserable condition. Luckily, I don't have pain with it (three years into the diagnosis) and the tremors stop when I sit down. Heat is a definite adversary - makes my symptoms worse. Fatigue is another aggravating situation with OT. Weight gain is a bummer because I can't walk more that a few minutes without having to sit down. (And my history is climbing New England mountains, hiking for miles with my husband over Class 1-4 trails, and riding our bicycles for 35 or so miles each time.) I tried a cane at the onset of the diagnosis but found I couldn't balance. My neurologist suggested using a rollator - a walker with four wheels, a seat, hand brakes. My balance is much better. Personally, I don't give a care what others think about my using this. If asked, I use it as an opportunity to educate others about this RARE condition. So far, there is no actual, discernable cause, no positive treatment, and no cure. I find no relief from any medication. Medications are just experiments by neurologists. Many of them are for Parkinson's (which I thank God every day that it ISN'T Parkinson's or Multiple Sclerosis). But each patient is different in their response to meds. If you find one mentioned in OT sufferers discussions, look the med up on the internet. Meds in one country might not have the same name as in other countries. (Only you can decide if you want to risk the side effects listed.) Good luck in your search for answers and your fight with the symptoms.
#6418
My name is Ernesto...I currently live in Cincinnati.
I began developing symptoms about three years ago. I was finally diagnosed with OT January 3 by a physiologist.She listened to my symptoms and conducted a EMG. Strangely, she asked me if I had googled my symptoms...I told her that I had but OT was so rare that I disregarded the results.
I guess my next step is to see a neurologist..but as rare as this is...I don’t see a clear way to find a treatment. Anyway..if there are any recommendations..would appreciate.
#6419
Hello I am Jim Kraynik age 71 and very active. Diagnosed with OT about 5-7 years ago. Now hinder with standing for short periods of time but not walking. Have to be careful with feet placement when in tight areas or trying to gain tight access.
Currently taking Clonazepam 0.5 3 times daily, Rytary 23.75/95mg 2 times a day and Gralise 1,800 mg once a day with dinner meal. Rytary has just been added a month or so ago and seems to help.
#6422
I have been dealing with these symptoms for 15 years. I thought I was doing something wrong. I need to find a neurologist in Atlanta who understands my condition. I have been misdiagnosed with several Parkinsons and Essential Tremor. A friend helped me find this diagnosis based on her observations of me. This is all new to me. Im not sure if I feel better or worse knowing there’s a name for this and other people have it. I am 71 and very active. I appreciate any advice anybody can offer.
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