The Orthostatic Tremor Forum (archive)

Thanks to your forum and website, I was able to print out an explanation of what OT is. I was diagnosed 16 years ago with Essential Tremor at Columbia Prysbeterian Hospital in NYC. But my neurologist did not listen to my description of my symptons. He tested me for MS and muscle weakness which was negative. He made me walk up and down the main hallways of the hospital to observe me walking. By this time, I was very embarrassed. I read on the OrthostaticTremor.org website a description of OT. And I was S00000000 excited -- every indication was what I was experiencing from curling my toes, difficulty standing but able to walk (fast) and sit with no tremors, looking for walls to lean on, sitting on stool to cook and shower -- all relevant to what I was experiencing. I went to my doctor (who originally referred me to my neurologist in NYC) and told him, "I'm not a doctor, but please read this -- this is what I have -- OT." I was embarrassed to keep returning to the neurologist and he did not listen to what I was saying. I had a list of some of the drugs available, and my GP told me he knew of a new drug-= Lyrica -- which he prescribed to me-- 75 mg. twice a day. I AM SO HAPPY. SOMEONE FINALLY LISTENED TO ME! I think my OT began when I had oral surgery 16 years ago. I also had been diagnosed with Lyme's Disease -- I had the most extensive lab tests. So -- I believe the combination of both these conditions lead to OT. It's reassuring to read comments from others who are going through what I am going through. God bless you, and I am thankful that God works through some doctors to give them the wisdom and compassion to listen to their patients and prescribe medications related to the patient's needs! I'll be back to talk to you again.

Hi. This is Marge from Manila, Philippines. I have had tremors on my left leg for 11 years now. I have gone through 3 neurologists & no one could seem to figure out what's wrong with me. Last week I was experiencing getting nauseaous, hyperacidity, etc due to an increase in the dosage of the medictation which was originally prescribed to me. The reason being was the orig medicine wasn't as effective as it used to be. By the way, the name of the medicine is Madopar given to me by a Neuro who, by the way described my problem as Parkinsons syndrome. Last week due a very bad condition I was in, I decided to see a Neuro & she said I am suffering from OT. She gave me a medicine which is supposed to sedat & take away the tremor. Unfortunatley, it only makes me sleep the whole day & when I am awake, the tremor comes back & it is really bad because I sometimes lose my balance when standing up. I am goin back to my Neuro this Monday...most likely I will mention to her about Lyrica. Thank you for the info.

Marge

Welsche : I'm so happy for you too. Your excitement of finally getting the right diagnosis is something that takes me back in time as well. A shared senario, a history of being misdiagnosed or not listened to, has become the sad background for so many of us who have OT. I'm gratified that the venue of the website helped you and that it is achieving it's intended service. We are bonding together through our input to educate the world of our existence so please stay in touch, Gloria