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[Hattie12]

I have had sudden onset 4 months ago of unsteady gait and loss of balance with one fall at home. Saw my neurologist who first ordered physical therapy for six weeks to improve balance. I did very poorly at this. Returned to neurologist who did blood tests for every well known disorder or disease causing the symptoms. These were all negative. Then had spinal tap to rule out multiple sclerosis. Returned few days ago. The tests were negative. He then did extensive exam and said I have orthotic tremors. The mornings are the worst for me. I know walk with cane. I have found a grocery that delivers. Although he said driving is fine , I am reluctant to go very far. I have been on Clonopin for several years for anxiety. it has not caused any improvement. I live alone with two grown children who live out of state. It was my son who found this site for me I'm very pleased he did. ssssstill adjusting to diagnosis and how it will affect my life. I'm pleased to meet all of you. Patricia Connecticut USA

[gloria]

Hello Patricia ( Hattie12) : Sorry OT has made an entry into your life but here on the site you will see that you are not alone and it is a place where you will find lots of coping skills and please add yours as well. I personally do not have the same feelings about driving, getting into my car I feel free of my OT and great enjoyment. Thanks for introducing yourself and keep us posted as you make adjustments in life. Gloria

[geandreas@aol.com]

I will try again. I have been trying to get a diagnosis for my problem for over three years. I have been to 6 specialists and they all tell me that I have an undiagnosed illness. I have been to physical therapy 4 times. I have reviewed the information on the website and I have the symptoms
for OT. I have an appointment at Duke Medical Center in three weeks to discuss this with the head of the neurology department, WISH ME LUCK

[Amy333]

I have had this condition for nearly twenty years, and it has slowly progressed to the point of utter frustration at not being able to do the things I used to. I have been extensively tested by nuerologists to no avail, they look at me and say " I'm sorry, I don't know what to do with you".
My daughter, who lives with me since my husband passed eight years ago, had been doing extensive research on the internet for several weeks, as she has watched me become more and more shaky.
Two days ago, she came across your website, and we were both in tears as we realized my condition is exactly what your website describes, has a name and possible treatment.
I now have an appointment to see my primary care physician, and have printed out much of the information for him.
I have gone back to exercising, which I had given up, as it didn't seem to help. and am looking forward to getting a prescription that may improve my quality of life. Thank you for being here!

[gloria]

Hi! geandreas??? I certainly wish you luck and would be very surprised if the head of the neurology department at Duke Medical Center didn't recognize your symptoms. Would be interested in the tests they give you? Gloria

[gloria]

Amy: I'm happy you too were able to recognize your symtoms from the website. Please let us know the outcome of your meeting with your primary care physician. By the way, walking is one of the best exercise for all , try to build up a good distance. Best Wishes, Gloria

[Di Di]

Welcome Geandreas and Amy...............To me, all the specialist has to do is give you the EMG testing STANDING UP , you hear the helicopter sounds ....very simple ...as long as they have the equipment. others have talked about the EMG taken sitting and lying down ,with no result and come away un diagnosed ...
Swimming and pool excersising is also good , if you can manage getting in and out of the pool ....for me that is really the only time I feel `normal`, the water seems to support the body ,taking away all OT sensations ,I go four mornings a week ....`works for me `
Like Gloria, driving too has a feeling of normal about it , thru do recall a bit of leg cramping in the early days ,am taking magnisum and that sorted that ..................once you get your head round it all , things will get better ....................take care all...Didi NZ

[Hattie12]

Hello. I was diagnosed a few days ago with OT. AS a Nurse Practitioner of Psychiatry , with much knowledge of neurology , I had never heard of this. Recently retired. Two grown children who live out of state. I already had Optic Ataxia and seizure disorder well controlled. Four months ago I began with loss of balance , unsteady gait , one fall at home. Wobbly standing still in grocery line. Went to my Neurologist who first ordered physical therapy to improve balance. Six weeks , twice a week. I flunked physical therapy badly. Returned to neurologist. He ordered blood work for known diseases and disorders with these symptoms including Cerebellar Ataxia. All proved negative. I am walking with cane at this point. Next was a spinal tap to rule out multiple sclerosis. This also was negative. I returned to neurologist few days ago. He had done a great of research. He could feel the rapid tremors in my lega and mid back. He diagnosed Orthostatic Tremors. I remain walking with cane and probably always will. I had tried Clonopin with no improvement. I drive locally only. I have my groceries delivered. I'm still adjusting to how this will affect my life. I appreciate this site. Those who have had this for sometime , I appreciate your helpful comments. Wish the best for all of us. Patricia. Milford , Connecticut

[dancer]

Hello, I wanted to share in the hope that this will help someone.
I had been suffering from OT for 11 and one/half years. I just got diagnosed on May 30, 2014.
I also have been having times in my life when I had severe stress and it took it's toll on my Adrenals causing various stages of Adrenal Fatigue. My first diagnosis for this was done by a Naturopathic MD in1990. He helped me get this under control through diet and supplements.
In 2003 the tremors began.
I was diagnosed with Chronic Fatigue Syndrome in 2010. I did natural detoxing of heavy metals for about 15 months and everything was back under control but still had tremors.
I would also add that I was born with Hypoglycemia and also adjusted my diet and added supplements for that in the past two-three months.
After my diagnosis in May I tried acupuncture after reading several blogs posted here. It helped some but the tremors were still there.
A few days ago I decided to try an Adrenal supplement again and the tremors are considerably better! Also, the brain fog and disorientation is gone! I am thinking clearer again.

[Marcie]

Hi my name is Marcie. I first introduced myself in late May of this year.
At that time I had been told by my neurologist to take up to 600 mg of Vitamin B-2 a day.
I take 200mg in the morning, 200mg with lunch and 200mg at night. The B-2 has definitely made me feel less shaky. I feel way more grounded. She also suggest 300 - 600 mg of magnesium 2 X a day.
This also seems to help. If you do this I suggest working up to the higher numbers. Especially with the magnesium. I am very fortunate that I can still exercise. This is also key in feeling better. I exercise for about 30 minutes in the morning, walk up hills for about 30 minutes after dinner and take about 3 hours of dance classes each week. If I stop exercising even for a couple of days I am back to feeling much shakier on my legs. I wanted to share this with anyone else that is suffering that could possible be helped. At this point I have not tried any of the prescription drugs. I would prefer to stay off of them as long as I can. Kind regards, Marcie

[gloria]

dancer : Your posting is very interesting to read how you are handling your OT mixed with a diagnosis of Adrenal Fatigue. Your tremors began in 2003 but diagnosed in May 30,2014 with OT. How were you tested for OT and are you still under the care of the Naturopatic MD and perhaps a neurologist as well? Thanks for posting, Gloria

[gloria]

Hello Marcie: Thank you too for sharing your approaches to treating OT. I know from experience how important it is for our fellow OT friends to read such information. Besides your supplements your exercise program is outstanding ....... walking is key for our mobility ! Please keep us informed with your magnesium and it's continuing affect on OT. Looking forward to your updates, Gloria

[Foster]

Hi Marcie, I wonder if you can give me more info about the supplements you take, I have never taken any vitamins in my life, & know nothing about them, but if they help I would sure try them, are they taken because your body is not getting enough magnesium or B-2 from food or is it just to help with the tremors? I have quite eating dairy, grains, fats etc. & wonder if I should be taking something to make up for it. I am very mobile considering I've had OT for 20 + yrs. my worst thing is grocery shopping! huge nightmare for me, I get by without any stools, canes, around the house, exercise a lot, swim, hot tub, run up & down the three flights of stairs in our house with ease, except sometime coming up then my feet & brain, don't work together, & I stub my toe, swear & yell a lot & at times have to put my hands down on the stairs, so I don't smack my face.... Oh the fun of it all.
Anyway I'd love to get any expert advise you could give me.
Thanks Shirley

[dancer]

dancer : Your posting is very interesting to read how you are handling your OT mixed with a diagnosis of Adrenal Fatigue. Your tremors began in 2003 but diagnosed in May 30,2014 with OT. How were you tested for OT and are you still under the care of the Naturopatic MD and perhaps a neurologist as well? Thanks for posting, Gloria

Gloria, My Naturopatic MD has retired. My Endocrinologist diagnosed me by the description of my symptoms. I have not seen a neurologist as I am also avoiding taking drugs when at all possible. Last summer my Primary Care Physician prescribed physical therapy. They pushed me too hard and fast and I felt it was not helping me at all. That is when I started using the WiiFit. I do the step areobics, yoga stretching and balancing, and strength exercises. I do not push myself with any of these but by doing them 3-5 times a week I have become stronger, more flexible and have improved balance issues without using the regular balance games as they were way too hard for me. I have found that walking for 20 minutes a day also helps. I also do folk dances once a week and have found the moderate to faster dances are easier for me. I really miss dancing more as I used to dance several times a week before the tremors began.

[Nola golding]

Hallo every one. Nola Golding and I live in Adelaide South Australia. I have read the post and think, this is a fantastic site. I have very mild epilepsy. Have had it since birth. I have just seen my 3rd specialist who could not tell me what was wrong until last 12 months. When at first thought it was anxiety as I was told. Had ear problems ear specialist said. It was not from my ears. So then I saw a back specialist who Saadi, it was not from my bad back. Then went to a neurological Physio and she thought it was. Othostatic tremor. Went to see a neurologist who deals with this. He honks it is. But will not know, until I have a test. Have had a EEG. He told me it would take 2 to 3 months to get in for the test. So so far all I have read fits the jack pot. So glad there are beautiful people out in the big wide world who have this. As I am not alone. Who understands. I cannot walk too far. Have to sit if I stand too long shake rattle and some time roll onto the floor. Thank god for walks. Seats. Sticks. Walkers.
A little about myself. I have just turned 60 have a wonderful family. King Charles dogs who keep me sane. Have had to give up my work. Due to ost and my back. Back is better now. I worked over 20 years in aged care. As a carer and then a diversional therapist. Which I loved. Funny now my husband works and helps me. He shops as I have found it too difficult to shop. Unless there are chairs close by. Or trolleys are my best friend. Well enough about me. I am would be thrilled to be in touch with fellow like minded people to chat with. Thank you for listening to my story. Kind regards Nola Golding.