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[Kathy F]

Hi,
I'm trying to reach Susan (Irish4411).
I also live in Las Vegas, NV and would like to be able to talk to Susan directly and ask her questions about her doctor here in town. I was diagnosed about 4 years ago with OT and haven't seen the doctor that I saw since. I was the one that basically told him what my diagnosis was and he agreed. So, if anyone can somehow get a message to Susan, I'd appreciate it. I tried to email her directly, but it said I was not authorized. So, I am trying my best from here.

Thanks and the best to you all,
Kathy
Las Vegas, NV

[jen]

hi, I am jen, 53 years young, used to be vibrant and energetic albeit I had some sort of vibration thing happening under and through my feet.
Last year, I found myself, taking at least 1/2 hr to figure out how to safely walk a few steps, after feeling a vibration inside for almost two years, which progressed into a full body tremor.
My lips, my tongue, my eyes, my body, my hands, feet, legs... my doctor thought I was having some sort of breakdown.
I would wake up and my bed would be bouncing, literally, no joke, because I was vibrating or tremoring so hard.

I now have a 'small" tremor which acts up if I try to exercise, i took up running to get healthy... my tremor got so bad I fell three times.
If I drink a small glass of wine, it gets worse, coffee makes it worse, tiredness makes it worse, emotional upsets make it worse.
I have muscle spasms which hurt too. I am still not diagnosed. I go to work and work very hard to maintain... keep busy but now this month I fell three times, broke my wrist and ended up with ruptured tendons.
this is really not my life surely???
what do I do???? I don't mind dealing with this, if only I knew what it was! I am at the end of my rope now.. because I am so afraid of falling and doing some serious damage to myself, I live alone and have no family close by, I rely on me.
Has anyone else had this or have any ideas at all? thank you for listening to me babble on.

[zanyjany]

Hello,
My name is Janie, my husband Todd has had OT for 5 years, I just listened to Gloria & Mike's interview on the radio and he also has a hard time walking in the dark, he also has a Vestibular Disorder in his Rt ear so I always thought it was the cause of unbalance not the OT, he does have problems with uneven surfaces, due to this, so going to bed at night for him can be a little scary and sometimes his legs are shaking so bad he can hardly get into bed, I always try to leave a nightlight on for him, I go to bed early because I work and he is unable to work due to his disablity so stays up later then me, doesn't want to turn the light on and wake me up. I just pray he doesn't fall and hurt himself, he has only fell one time so far since getting OT and that was outside during the day. I am also a nurse and have reading about the new research for people with MS and other neurological disorders called CCSVI or Chronic Cerebrospinal Venous Insufficiency, my husband says he feels like he doesn't get enough blood to his head, thats why he gets forgetful or loses his train of thought, when reading about this condition he sounds like this could be something he could have, does anybody know if they have done any research with people with OT? From what I have read from the study done in Italy, the people with MS was the only ones with this disorder, they is a special doppler test you can do that checks the blood flow to see if you have this disorder and also a MRV like a MRI with special software, does anybody know where these test can be done in the US?? We live in the Olympia,WA area I would think either the Seattle or Portland area would have this available. Just putting this out there to see if anyone in the OT community has heard about this, thank you for your time and your help. If you goggle CCSVI you can get tons of information about it. Take care & God Bless.
Janie

[gloria]

Janie: You say that your husband has had OT for 5 years. Was he diagnosed with OT or has he just been just exhibiting the symptoms of OT? Walking in the dark is a challenge for us probable because of our poor sense of balance. However you have expressed that he has other problems so as far as research on OT if you feel he needs testing perhaps going to the Mayo Clinic in Rochester, MN. might help. Gloria

[coveredbridge33]

Hi all: My name is Jerry and I am a retired American, formerly from NW Connecticut now living in Germany. I was diagnosed with OTR about 25 years ago, maybe more. I tried Clonazepam, Gabapentin and Welbutrin but had a reaction to all of them so I guess I kinda wing it. We travel a lot so have to put up with the shakes and pains of all that standing, etc. I am curious to know of any helpful exercises some of you may have experienced that helps the condition.

[ckgipsy]

I've read a few of the letters here before but put off posting myself. Don't know why---just because, I guess.
I started with tremors over 10 years ago and even quit working as an RN in a home health company due to difficulty getting in and out of the car and up and down apartment steps.
Then one day I was tired and tried to open a seasoning packet for supper and I was gyrating so badly that my son sent me to the living room to my recliner. I always felt like an old model T in idle. I finally told my doctor I could no longer stand it and he sent me to a neurologist who said I was only his 2nd case of OT. He got on the computer and it described my problem to the "T". I told him "That's ME".
He put me on Klonopin 5 mgs. twice a day but I still have the tremors--maybe not as bad but they are still here. The med makes me so sleepy and I feel like a lazy bum when I fall asleep when I should be working in or out of my house. Even trying to put on makeup is difficult . The DR. said it's not only in the legs. My legs still move some when I'm in my chair. The DR. also said a higher dose of meds would only make me sleepier.
I tire easily especially when getting groceries and I really have to hang on to the cart.
I'm going to be 69 in June but this often makes me feel a lot older. My stamina is limited and I hope I don't end up in a wheelchair.
Hope I didn't bore any of you but just wanted to let you know how I feel about everything and I'm glad I'm not alone with this.
I'm from Dover,Oh. and would like to hear from anyone.
Cheryl Marshall

[MaureenB]

Hi Cheryl
like you I read the letters for quite some time before registering,however i think you get the feeling of belonging, and you look on the bright side ,even our nearest and dearest cannot possably understand the stress we are under , and because its not life threatning, i feel even some GP's think its like E.T.
We all become trolly dollys and guys and hang on to shopping carts.
I Just had a day bumming around the garden.
Kindest regards
MaureenB

[Dan P. Murphy]

Dan Murphy Imperial, MO
I have been diagnosed with POT and I'm not smoking it! I've had it since September 2009. It started during radiation for prostate cancer. Doctors blamed my hips, my back, no one had ever seen anyone having tremors like I was having. Only in my legs and only when standing. I have had two chiropractors stop the tremors temporarily, one by taping my legs at the knees and the other by laser and electrical stimulation. One stopped it for 2 days and the other for a day and half. I was really excited but alas, it's back. I am planning on trying acupuncture and will see how that goes. Has anyone tried this? I was on clonazepam for ten weeks and became a zombie. It did not help my tremors. The neurologist wants to try Keppra next, any thoughts there?
I am turning 70 in July and have always been very athletic playing fastpitch softball, golfing (still trying), bowling, etc. I push myself so I am still golfing and still bowling. But this physically wears me out.
I am thankful for finding this site, actually it was my mother-in-law who helped me find the site.

[mcphersonr]

I am newly diagnosed with OT although have had the symptoms for approximately 12 years. Like so many have also written, I was referred for test after test and specialist after specialist including several neurologists and ear specialists in the Kansas City area. Last fall, my husband heard a Chicago neurologist with Northwestern University describing himself as the "dizzy doctor." Long story short, we were able to get an appointment in April and after 30 seconds watching me stand, indicated "orthostatic leg tremors." This doctor also feels I have a variant of migranes without the headaches though not known if the symptoms are related.
My husband works extensively with medical research and even he was not able to help me pinpoint the issue until we hit upon just the right information. Unfortunately we went down the path of inner ear disorders, autoimmune deficiencies,i.e. lupus and MS and did not focus on leg issues. I found it very difficult to describe my symptoms, but I am not sure it would have made any difference since OT is not well-known.

Of course, I would like to have answers to questions related to the cause and possible cure, but frankly am delighted just to know I have a validated disorder.
Has anyone had a positive experience with physical therapy? If so, can you describe.

[highlander58]

Greetings all - My name is Malcolm and I was recently diagnosed as having OT. It was quite the process but I finally visited a specialist who knew what to look for and was familiar with the condition. What a relief to realize I didn't have a loose screw. I've just commenced treatment and will be having an EMG performed this coming week - ahhhh - a new experience to look forward to. Oh well, if it produces more information for my understanding of OT it's worth it. I've been doing some research on my own and thankfully found this site - thank you!; thank you! As I begin living with OT I'm sure to have a lot of questions and look forward to corresponding with some of you "veterans" to gain insight into how you cope with certain aspects of daily life with OT. I reside in the Northern Virginia area; only a few hours from Atlantic City so it's possible I'll make that trip this October. I do have one question; I've read that daily walking helps and was wondering if anyone had found that to be true? I can understand how walking strengthens the muscles and increases circulation but does it really help OT? Would be glad to receive your replies.

[gloria]

Malcom: Welcome to the website but sorry this means you have OT too. You are lucky that you found a specialist that diagnosed you properly. I do hope that you will join us at our meeting in Atlantic City. There you will be with a circle of OT friends who understand and can help answer questions and give insight about coping with OT. In answer to your one question, of all the exercises that we can do walking daily is the most important. I have lived with OT for almost thirty years and if I do not walk as daily rountine my legs are far more unconfortable and walking becomes more difficult. Walking must be at a good pace not a "slow, stop and go" type. Do not become sedentary with your life. Hope to see you at the meeting, Gloria

PS if you need any information about the meeting or do plan to attend please contact Peggy Whitta
pwhitta@bell.net

[Wendygsd]

Hi Everyone,

I'm Wendy, 60 years old and from NH. Not only do I have OT (for well over 10 years) and ET, but also numerous other health problems. I just wrote up a long intro detailing them, and it took me so long to type that I was logged off for inactivity. Everything I do is slow, so I'm not attempting type them again right now. I'm glad to have found this group, but wish there was a little more activity because, believe me, I really need some support. To put it quickly, due to my tremors and some chronic pain conditions, I'm beginning to feel non functional, and a burden on my husband. Once a very positiive, active person, I'm finding myself overwhelmed with negativity. I was always young for my age, and over the last 10 years, I thinkk I've aged about 25. My husband works long hours, and I'm home alone from noon til midnight. I've seen neurologists, orthopedists, and done PT, which only caused more pain and problems. I've tried almost every drug in the book, and nothing helps my severe tremors, pain and fatigue. My life now consists of days spent playing 2 games on Facebook, and chatting with old ladies, and after years of a very active, social life, I've gotten so I only go out when I have to. I've seen some of the best doctors in Boston, and had many negative tests. Because of balance problems, I've had a few doctors that thought it was related to my cerebellum and have spent years pursuing that. After doing hours of research, and reading the posts, on your site, I know it is OT & ET....which one doctor in Boston told me five years ago. I also have Fibromyalgia, have had blood clots twice, pulmonary embolism once, ruptured achilles, an achilles reconstruction, 3 other foot surgeries, with another scheduled, spondylitis, IBD, chronic UTI's, chronic tendinitis in my elbows, lower legs, and my 'good' foot. If anyone has any positive ideas for me, pleasse post!!

[janet2QX]

Wendy, my heart goes out to you. I am 76 and have had this condition for a long time but never knew what it was. I joined the OT forum In Nov. 09 after I was in Rochester by Dr. Matsumotto. I only knew of him and the condition called OT because of an article a friend gave me from "Tremor Talk" that was about Gloria who mentioned this doctor and this forum. I was given a test and he said it definitely was OT. I was relieved to have a name for it after all these years.

I am on gabapentin and primidone now. Going from one medication to another is not easy. It takes patience and time to realize the results. Nothing helps completely. These meds have helped me somewhat. But my instability and ataxia keep me from being as active as I would like to be.
Accepting what one cannot change and learning to live with it is how I have coped. I take an antidepressant. I try to get out with groups that stimulate me and keep my mind on other things. Book clubs and knitting groups. I try to stay active by doing water aerobics and walking. I am a lot older than you but I consider myself a young 76. I have a sparkle and a smile, even if I don't stand up very well.
I wish you the best. Janet

[stella R]

Hi Janet,
I know what it feels like for you now.
I was so long before i got diagnosed,
It should help if you see a neuogolist who deals in Movement Disorders.
They seem to be the only ones who know about O.T.
Dont give up on doing things.
You just have to do them in different.
A walker with a seat has been a heaven to me.
Would not go shopping without it.
I am also on Gabapenton.
It helps some.
I dont let it get me down.
I am 72 now but have had this for about 10 years
We are having a meeting in Atlantic City next month to
discuss our pros and cons with this.
You might like to join
Take care
stella

[Wendygsd]

Thanks for replying Janet. My biggest problem, other than numerous physical ones is that I watched my mother die inch by inch due to what was diagnosed as ET, but she also had severe balance problems, and at 75. she started falling and broke bone after bone, including ribs (and partially collapsing a lung), scapula, hip, and 5-6 back fractures at least. She did not have leg tremors but did have osteoporosis from being on Prenisone for about 8-10 years for polymyalgia rheumatica, and that's one thing I don't have. I fall quite regularly and other than bumps and bruises, I've only had to have my head stapled once. Anyway, within 3 years, she went from totally independent, to assisted living, to a nursing home where she was totally bedridden, and couldn't even turn herself, between back fractures. She kept saying, she didn't want to live, and I kept trying to get her will to live back. At the time, I had a dog grooming business, and was working daily with severe back pain because due to my leg tremors, I had to work sitting, and also have degenerative disk diseease, with numerous bulging/herniated disks, but I visited her daily. When her bones healed,, I took her shopping, to doctors' appts., dentist, eye drs'. etc., but she continued to say she didn't want to live like that. My brother and sister visited once a week, if it was convenient, and felt I should let her do what she wanted, yet they didn't spend the hours with her that I did, and get such mixed signals. Another sister lived 3 hours away, is bi polar and has Lupus, and visited once during my mother's decline, and then came when she was dying. I talked to her dr., and her nurses, and we all agreed that if she really wanted to die, she wouldn't be going to all those appointments, and wanting to go out to eat and shop. What she really wanted was a cure. Eventually, it got to the point, where when she was finally able to get up with her walker, she would fall within days, and a month before her 79th birthday, I met her once again at the ER, and when the dr. came in, I told him, 'I don't know how much more of this she can take' and we made the decision that he would allow her to discontinue her insulin, heart and BP meds. He went in and talked with her, and that's what she wanted, and she was gone within 5 days. This was a horrifying experience for me. My father had died at the age of 39 from blood clots, and my mother raised us single handedly, and was a very strong person. The word 'no' was not allowed in our vocabulary, and I had a great love and respect for her, and it was so difficult for me to suddenly be the one in charge, but no one else would, so I had to. When she had a UTI or was on a lot of pain meds from a fracture, she would lose contact with reality, and once she thought the nurses at the hospital were plotting to killer her, and at 11:00pm, I went to the hospital to calm her down so they wouldn't tie her to the bed. During my mother's final days, I was called to the nursing home at 2:00 am because she was in congestive heart failure, and wanted to go to the hospital. I jumped in my car and got there before the ambulance, and as soon as I opened the facility door, I could hear her raspy breathing all the way down the hall. I went in the ambulance with her to the hospital, they put her on morphine, and stabilized her, and the next day, she went back to the nursing home where she died a couple of days later.
Back to me....I was on Propranolol originally, primidone for about 5 years, along with Mirapex and Clonazapam. I've tried Gabapentin, which I couldn't mentally function on, and it didn't help anyway, I've tried at least 3 Parkinson's drugs since seeing a Neurologist specializing in Movement Disorders, who I'd been seeing for the last 2yrs. Aug. 31, she told me that Fibromyalgia is not real (just a catchall) and decided I must have a NEW disease!!! NOT!! From there, I went to researching OT, which the genetist in Boston diagnosed me with 5 yrs. prior, and with all the new data on line, I realized that is me. Right now, I am only taking the Clonazapam and Mirapex because it helps with my aching legs so I can sleep at night. (along with meds for my other problems)
After 13 years, I am at the point that I am having trouble walking, can't cook because I spill everything and spending my day in the recliner with my laptop. I'm rapidly losing my independence. Do you blame me for being a little discouraged? I wish I could atttend the meeting in NJ, but unfortunately finances at this time don't allow it, so I sure hope someone gives us a detailed report. Sorry for my whining and rambling...