This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

Hello, Everyone!
I am one of the "victims" of the long, drawn out process of trying to find an accurate diagnosis for my tremor condition. This website certainly does intrigue me. I have been diagnosed with essential tremor, and felt at the time that this was accurate since it runs in my family. Yet, two years following the diagnosis, I started having balance problems and my legs would get heavy. The more I pushed myself to keep going, the worse they would get. My medication, primidone, was greatly increased and then decreased, then discontinued altogether. My neurologist, two thus far, do not really know what's going on with my legs. Standing still is a problem, but the difficulties do not disappear when I walk. When the condition is especially severe, I tend to fall backwards and sometimes just walk in place instead of progressing forward. All tests have been run: MRI, blood work, exams; nothing new is revealed. An MS doctor told me that I do not have this disease. I feel desperate; the fatigue is tremendous to the point of having to use a wheelchair and/or cane from time to time. I have read all of the entries and feel that they are describing my condition, but have little confidence in my present doctor as far as diagnosis. I noticed that there was an entry from Georgia, USA. Would that person be willing to share the name of their doctor so that I can either confirm the OT condition or continue to investigate? I am willing to share my email address at some point if this information needs to be kept confidential. Thanks for any help you can offer!
Terri From GA
Hi! Terri: Welcome to the web site! In your entry you say you feel the symptoms that you have seem to be the same as so many of us and like you, many of us have had a difficult time trying to find a proper diagnosis. If you feel that your symptoms are like those described on the home page of this site( What is OT? ), as well as the input of many of our fellow OT friends than I suggest you find a medical center that has a neurological movement disorder department and hopefully you will find a neurologist there that knows about OT. Your other idea of contacting the person from Georgia might be of help as well. Go back to that entry and trace back to see if when they registered they left a way of contacting them. Also I noticed that when you registered you did not leave your location, perhaps you should go back to your registration page and record that you are from Georgia, USA, that way someone may contact you. Good to hear from you and keep us posted, Gloria
By amoss
Hi... My name is Alison and I am 23 years old. I have struggled with hip pain and leg weakness for the past 4 years and have been shipped off in various directions.... I recently got sent to a neurologist due to concerns about MS- needless to say this scared me quite a bit... However this was cleared, but the neurologist noticed i had a tremor in my lower limbs and has consequently diagnosed me with orthostatic tremor... I feel kind of lost as when I asked him for information he wanst really able to offer much, but found this site for me. He has prescribed me neurontin-- or somehting like this. He only has one other patient with OT and this has been successful in the management. I was reading over some postings and some people have been on it but are now trying toget off... is it not a good medication?
Not only do I know so little about it all, I now dont know if it is the meds are somehting I should be taking....

Does anyone have associated pain with OT?
Does physiotherapy help?
Does it get worse as time goes on?

I would really appreciate some guidance etc from others...

By donnaf
My name is Donna 38 yrs. I have recently been diagnosed with OT. Having suffered for nearly 16 months straight after the birth of my second child in March 2007 . Actually, when I was pregnant I was diagnosed with mild pre-eclampsia, however I feel that some of the symptoms I felt then have never left me). I was initially treated for panic attacks/anxiety. After being referred to a neuro in May 2008, he diagnosed it nearly straight away. I have had an MRI done and at this stage he does not believe that I have MS nor will I get it in 12 months time (even though a few lesions and bumps do appear). Next week I am about to start SIFROL (on a very low dose - used for advanced parkinson disease) and then back to the neuro in 6 weeks time for a follow up. At the moment the only medication I take is valium (and not everyday). I also at times feel "foggy" /heavy in the head , very tired, more reliance on my glasses as I feel like my vision is blurred without them (even though the optometrist tells me I nearly have 100% vision!!!!!), ache and feel weak in the legs and sometimes feel an overwhelming sense of anxiety/panic either in public or at home - is this the OT. I can not actually feel tremors in my legs - is this normal. Looking forward to hearing from you. Somedays I can stand for long periods and then others definitely not - is this normal. Just looking for some answers as there is such limited info apart from this website. I am so far very confused. Cheers
Hi! Donna: You have experienced a lot of physical and emotional changes in a short period of time. However, time will level out much of this and I believe your OT symptoms will become more defined and you will recognize them better. As far as not feeling tremors per se in your legs that is because of the high frequency of our tremors and we often do not describe or feel tremors in our legs the same as the more familiar tremors such as PD or ET. You were lucky you found a neurologist that was able to diagnose you as quickly as he did. Yes OT is very confusing in the beginning especially with the busy life of a young mother. Hang in there and remember you have many understanding friends here at the site.
Hi, my name is Miriam and I joined this forum is hopes of helping my mother who was diagnosed with OT about 3 years ago.
She is 80 years old, otherwise in great health and lives in the Miami/Dade County, Florida area. She is very active and is having a difficult time with the limitations OT presents.

We are looking for a neurologist (or other specialist) in the Dade, Broward or Palm Beach County areas that has extensive experience with OT patients and possible treatment options. We are also interested in learning about any movement disorder treatment specialists or centers in Florida or the US East Coast.

Has anyone tried physical therapy or acupuncture?
Thank you to all that particiapte in the forum - I've learned a lot reading through your posts!
...Miriam in Florida
Hello Everyone!!

My name is Susan, I'm 54 years old and I live in Las Vegas Nevada.

I just returned from UCLA last Friday with a diagnosis, finally! Now that I know what to call it, I now have to figure out how to live with it. After reading several of your posts, I get the impression there isn't much out there that helps for long, we just have to learn how to cope the best we can.
I work at a major casino in Las Vegas. The nature of my job requires me to be on my feet for 8 hours a day, sometimes standing in one place for 2 hours at a time. Only you can imagine my desperation trying to find something nearby to support myself. I start to shake uncontrollably and then the exertion make me start to perspire. When I can walk away my legs are so stiff, I feel like I have flippers on and am very robotic in movement, sometimes lurching or staggering. (So embarrassing).At least for the time being I have chosen not to inform my employers of my diagnosis. (The job market in Las Vegas is very unstable right now)

I have had the problem for a few years now and have been to a number of doctors and neurologists for it. My current neurologist was treating me for Essential Tremor. He was giving me primidone and inderal. Neither worked very well. Still can't stand for more than a minute without symptoms becoming severe. Just started on Clonazapan.
It helps so much already knowing I'm not alone in this. Thanks
By MikeS
Hi Susan
How do you manage to stand for so long?It must be agony.Do you think you would get fired if your employer knew,could they actually do that.I always thought that the disability laws in America were very strict.OT is a chronic disorder and must be reconised and treated as such.Could they not provide you with a chair or a high stool to sit on?
Hello Mike!

The nature of the casino business is like no other. We are considered "at will" employees and can be let go for pretty much any reason they like. The job pays very well and so far I have been reluctant to come forward and tell my employers about my situation. I mostly do my best to hide my distress and try to find a way to lean against anything as subtly as I can. My legs are very sore by the end of the day, can hardly move once I sit down. Just getting through one day at a time. Since I've only recently been diagnosed, I'm hoping for at least some success with the new meds.
Really good talking to someone who understands. :D
By MikeS
Hi Susan
Not only do we understand we care as well.As I said I dont know anything about American employment law and to complicate further I am sure it differs from state to state.I am wondering If out there somewhere in our midst there is a lawyer...or if someones son or daughter is a lawyer that might be able to advise you of your rights.It seems to me that to be fired because of a disabillity cant be allowed these days.I mean you cant fire anybody for anything anymore without getting your ass sued.As someone who spends a huge amount of time in casinos in Las Vegas (I play poker ) I have seen many workers there in wheelchairs and you dont need that just somewhere to sit.I hope the meds help you.
Please keep us posted how things are going.
Keep Smiling
Hello Susan: I definitely think your situation warrants a consultation with an attorney who is familiar with social security disability law. I was diagnosed with OT back in 1996. At this point I can no longer stand but a few seconds before I need to find a place to sit. However as MikeS has said unemployment benefits are controlled by the state and although the general rules are the same, the benefit amounts differ from state to state. For instance, Georgia's unemployment benefit is $320/week while NJ's is $560/week. I don't know how each state calculates and caps their weekly benefit. Google the SSA site for your state. It has lots of information on it that may help you. I've been taking Clonazepam (seems to be the drug of choice) for many years. It seems to "take the edge off" but to be honest with you the tremors are still there. I hope it works for you. Good luck and keep us up to date on your progress.

Susan, we all understand what you are going through and I can't imagine how you can stand for that long a time! The latest posts here have advised you about your disability rights. However, I would like to know what doctors you saw when you went to UCLA because that is where I was finally diagnosed. I have a fairly close relationship with my doctor there, even have her private cell phone number to call on, and I think it would be helpful to let the UCLA neurological team know they have one other patient with the same problem besides myself. Maybe we can get the ball running for them to get more research and interest in this disease. I have listed my private email address if you wish to use that way of corresponding to my request. Jo Larson
It is great that Susan and Jo Larson have found a Movement Disorder center that is now taking an interest in OT. As I said before, that UCLA had only one OT patient was amazing. That was a year ago and now they have three. Commuinication between the above two to determine if they had the same Neurologist is important. Also do the neurologists at UCLA share their information with others on the staff.
Helloooo Again!
Thanks for the interest and the support.

I saw Dr. Mollie Johnson along with 2 other neurologists at UCLA. After I was with Dr Johnson for about 45 minutes, you could just tell a light bulb went off with her and she seemed to know what was wrong. She then consulted with one of her collegues and they decided to call in their movement disorder specialist to see me because "they only had seen 2 other cases". I have to admit I was skeptical at first because my neurologist here in Las Vegas had been struggeling for more than 2 years to figure out what was wrong and they had me figured out in about 1 hour. Then..... I came home and found this website... AHAAAA!!!!! It could all have been written by me!!! I have to admit, it was both good news (now I know) and bad news (nothing really seems to work for long) So far the meds aren't having any effect at all, they want me to come back to UCLA if the meds don't work out.
On another note, I have been compensating for so long on the work front, I'm not quite ready to clue them in. I do my best to walk around as much as possible. We all know being on the move helps a bit for the short term. I have a lot of trouble negotiating stairs and escalators. Does anyone else have this problem?

Susan :?
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