- Sat Jan 04, 2020 8:36 am #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.