Hello everybody:
I havenot been in the forum for long time,I live in Sydney Australia, I was diagnos OT 3 years ago but i think i had it for longer time I have try Mysoline in high dose but didnot work also Neurontin nearly 2000 mg a day didnot work ether the drug i am now is epilim for the past 3 years 400 a day and 125 Mysoline at night my tremor are getting worse but Dr said is not much he can do. I am working part time with a lot of difficult but i must keep going, i am not an expert on english language so forgive me for my spelling i try my best I read sometimes the post thank you for the information. I also belong to ET group,i hope we will get better soon in one way or other keep smiling bye now
I have been all over the internet searching for information on both ET and POD. I have tried at least at least six medications for my diagnoses of POD, all to no avail. In all the chat rooms I've entered I can find no one who has been successful with medication.
Does anyone know of any clinical research being conducted in Florida, where they are seeking patients for study?? If so, please advise as I would like to a participate. Thanks and God Bless!!
I am so happy to find this website and know there are other people out there who are suffering as I am. I was diagnosed with Essential Tremor last month, but Dr. didn't identify my leg tremor. I discoverd it by research the internet. I have had this condition for many years, but never could find out until now what it is. My worst problem with the OT is walking as I am always in extreme pain when I do any amount of walking. Have only tried Mysoline but it causes too many side effects. I do better without it. Hope to get some feedback from some of you out there is cyberspace.
Hello Peggy Ann: I donot live in America so i cannot help with recearch,my medication works 50% but i been to long on so i think i need more is call epilim,thank you for responding take care.
Mae: I live in Sydney Australia and i belong to a group if you want to visit try ettremor at http://groups.yahoo.com/group/ETtremor.
the same like OT we are very freandly people take care Porotin
I have been all over the internet searching for information on both ET and POD. I have tried at least at least six medications for my diagnoses of POD, all to no avail. In all the chat rooms I've entered I can find no one who has been successful with medication.
Does anyone know of any clinical research being conducted in Florida, where they are seeking patients for study?? If so, please advise as I would like to a participate. Thanks and God Bless!!
Peggy Ann, my name is Betty Lewis and I live in Florida. I would love to hear from you and if we live close enough it would be wonderful to be able to get together to chat 'one on one'.
I have been very fortunate to have met four women with OT ~ non live in FL, but were either here on vacation or passing through for a trip. I have even had the priviledge and pleasure of meeting and spending the afternoon with Gloria and her husband.
I do not know of any testing being done here in FL at present; but I haven't checked recently. I did go to the National Institute of Health at Bethesda; was checked out by the Chief of Neurology and approximately a dozen others observing. They wanted to put me into a study even though they had others with OT; because I was told they had never seen anyone like me! I am not sure if that was good or bad.
I do hope to hear from you and you will let me know where in FL you live. I live in Rockledge which is on the east coast near Kennedy Space Center.
I hope we get the chance to meet; it makes such a difference to meet, see, and talk to someone in the same situation as you!
bye now