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[molly]

My biggest problem is I am unable to stand for more than 30-60 seconds without the urge to sit
If I can't sit then I sweat and feel really sick
My doctor has tried two medications but I am now taking
Nothing
I can't honestly say no improvement either way
I see him in June and will discuss options
The positive thing I now know what is causing my symptoms that I have had for years

[Shorty]

I'm not sure that I belong here but your forum has helped me more than you will know! I have been having symptoms similar to what you describe for years and not really been able to articulate what was happening. My family doctor's set up is that you are sitting in the examining room when he enters. He is sitting at his desk when you leave so he doesn't see the struggle you have to get up the stairs, stand to make the next appointment at reception. I've tried to describe my jelly thighs and stiff calves when standing but I look so normal when sitting that he has not taken it very seriously. Come across as a whining hysterical person. My last attempt at this discussion lead to a knee xray! I have no knee pain! I am diabetic and have seem a kinesthesiologist at the diabetic centre who referred me to a physiotherapist with an interest in neurology. She suggested a walker (used a cane for years) As soon as I stand, the shaking starts now. It seems more visible now than it was. I have to lean to do dishes, brush teeth, put on coat etc. Dress sitting down. No tremors when sitting or lying. Have had episodes of freezing when I go to move after standing longer than a minute. Proprioceptive sense is bad. Walking on grass, getting off curbs, walking down even slight slopes, changing surfaces can be difficult. I must hang on to rails in elevators etc. I wall and furniture walk at times around the house. Tremors improve with walking especially fast but feel it in my chest fairly quickly. Anxiety is a definite factor. I downloaded liftpulse but have gotten some mixed results. Sometimes in the 14-15 range and other times in the 5-6 range. Tried it on my husbands sitting thigh and got 19! (my cat also purrs at 19) Maybe if I took my cover off the phone, I would get more accurate results but it is on really tightly. I don't know what the chances are that I have something as rare as OT but I thank you for the information. I felt an immediate identification with your symptoms and keep coming back to your forum. I know I am going about getting a diagnosis in a backwards fashion but having documentation from other medical professionals will help and I really basically like our family MD.

[gloria]

Welcome Shorty: I have an appointment to visit someone this morning but will answer your posting that is describing OT symptoms almost completely.......Will write to you later today. Gloria

[gloria]

Hi! Shorty: Your chances of being diagnosed with OT by your family MD is nil. I'm glad you found the website and were able to indentify the symptoms you were experiencing are those of OT. You will need to find a neurologist who is familiar with neurological movement disorders that can recognize your symptoms of OT and will probably give you an EMG. Such neurologists are generally found at larger well known medical institutions. Also you mentioned that you are not at times able to articulate what is happening to you. Recently we had a new person join the website with OT and she has made a suggestion on how to tackle the subject of " telling people"...... her website name is Tigermouth ...... if you have not already read her posting please do !!!!!! I think it is a GREAT solution to our hard to understand reality of our OT lives. Gloria

[oldwoman]

hi, my name is marti from wisc. after a yr. i finally found a dr. that knew what was wrong with me. so far i have been able to live with the owful tremors. i still work if you could call it that. i take care of a young woman in a wheelchair and mostly visit duriing the day when her husband is at work. i do some light housekeeping. for over a yr i have been going to the dr trying to make her understand something was wrong with me and demonstrating what a tremor was like. she never addressed it til i insisted on an mri. had it on fri.,had a seizure on sat and finally a whole lot of test done. found out i had had strokes on either side of my brain. and the 3rd neurologist finall told me what i had. i was so happy to finally know what it was.now i am looking for other people who have this to tell me what they do to try to make it better.

[gloria]

Dear oldwoman but I bet you are not as old as me! Thanks for your introduction and you are in the right place to find out what life is like with OT from a great group of OT friends so keep on searching the website and ask questions too!...... Did the doctor have any comments about the brain strokes you had ? Did they connect it in anyway with your OT? Are you on any medications? Gloria

[gardenlily]

Good morning, everyone,
So nice to find a group like this who understand how difficult this OT can be. I was finally diagnosed this past April by a young neurologist in Toronto.
This diagnosis came after 5+ frustrating years of telling every doctor I met what was concerning me and nothing was done. Finally, one young doctor suggested physiotherapy(after 20 sessions, he wrote to the family doctor and suggested further investigation). I was sent to see a neurologist here in Kingston, who did a cursory exam and suggested an MRI of my complete spinal area. Nothing much showed up on the MRI but he never asked to see me again and made no suggestions whatsoever as to other possible tests that could help determine the problem. If it was not for my sister(who works for a neurosurgeon) showing the results to her boss, I would never have had the opportunity to meet this new neurologist and have a diagnosis done.
I am now being treated with clonazepam and, for the most part, I am seeing some relief with the tremors. I sincerely hope that things keep improving because just the little bit of "normalacy" that I have experienced has given me some light at the end of this shaky tunnel.
I have found reading the coping stratagies that have been posted and have definitely tried quite a few.
It really is comforting to know that we all have a place that we can share experiences and ideas that help our daily routines become a little more normal!
Pleased to be part of the community. I am from Amherstview, Ontario(10 minutes west of Kingston, Ontario, Canada, and look forward to hearing if there is anyone in this area that suffers from OT as well.

[gloria]

gardenlily: Thank-you for your introduction......at what age did you first notice that you had a standing problem? .......... Were you a working gal and if so what was your profession? Thinking back in time are you suspicious of anything that might have been the cause? Does the name "gardenlily" mean that you are a "gardening lover" too. I am...... love being out in the beauty of Nature. Look forward to more of your posting ongoing experiences and questions too ! Gloria

[distone]

Hi I'm Dianne and am 62 years old and live in New Mexico. I have had OT about 15 years which has gradually gotten worse. I am a Wilderness 1st Responder and a avid hiker. I just hate to stop and stand around - you know what I mean I was officially diagnosed this year with OT and began using gabapentin 600mg x2 a day, up from 300mg x1 a day. Seems to help some but also feels a little like a withdrawal effect in the morning when I wake up ---very shaky ---I am hoping to find something else that will work better for me. I am happy to find this group and know there are others out there like me. I really dislike this OT stuff but I also know there are others who have much worse than OT so I try to educate myself on what I can do to help myself cope with it and educate others around me.

[gloria]

Dianne: I commend you on being a Wilderness !st Responder and hiker. There are no medications for OT that cure , they only moderate the symptoms plus OT is progressive therefore with time meds become less effective.

[quote]" I really dislike this OT stuff but I also know there are others who have much worse than OT so I try to educate myself on what I can do to help myself cope with it and educate others around me." ]

Thank you very much for your wonderful attitude and willingness to help however please keep us posted on how YOU are doing !

Gloria

[Ribbons]

I am in the middle of tests and test results to confirm a diagnosis of OT and am here to learn more about the condition and how it can vary from person to person.
Thanks for adding me.
Ribbons.xx.

[gloria]

Ribbons: Welcome to the website and thank you for the posting here on the Forum.....please let us know more of your history & age when you first noticed the symptoms of OT etc........ if confirmed you will find you will have many understanding OT friends here on the Forum to answer your questions. Looking forward to your postings, Gloria

[Rachel]

Hi I'm Rachel. I live in the UK. I'm 47 and was diagnosed by a neurologist two years ago. I first noticed symptoms when standing at the from of church to say the prayers, I thought I was just nervous, but then also recognised that I was also getting 'shaky legs' in the shower or when cooking. Luckily my GP referred me straightaway. I didn't take anything for a while, but was offered clonazepam - this does help the symptoms a bit (I tried a month without it earlier this year), although I'm not taking the full dose he wanted me to take because of the drowsiness (I sleep well!). I work but some days I even struggle to hold a pen. I would love to know what I can do to help myself further, there is so little advice out there, particularly as I seem to be relatively young to have a diagnosis. I am glad to have found your site, and realise that more people appear to be affected than seem to be reported, although I also find this sad.

[gloria]

Welcome Rachel and thank you for introducing yourself to your new group of understanding OT friends.

To quote you " [ I would love to know what I can do to help myself further, there is so little advice out there, particularly as I seem to be relatively young to have a diagnosis ".]

....... I know exactly how you feel, I was around your age when I had my first symptoms of OT but that was around 30 years ago!!!!! The things that we can do is to develop coping skills that will help with our individual life style experiences or as I personally try to do is to find ways to "work around our OT". Physically and mentally it is a challenging way of life but here on the Forum we are trying to help each other. Most of the meds that we are given seem to make us sleepy and do not make our symptoms go away completely. I personally take Gabapentin and have the same experience but it is better than not taking something to take the "edge off". Exercising physically the best is walking at a good steady pace and doing this rourtinely is a good habit. Keep on searching the our website and look forward to your postings, Gloria

[Lila]

It seems likely that I was already experiencing orthostatic tremors almost 30 years ago when I knew that it would be difficult for me to stand still under the bridal canopy at my daughter's wedding. Luckily my husband was standing next to me and I was able to hold onto his arm for support. The disease in my case was insidious and at the outset I didn't think that anything was actually wrong with me. I told my family doctor that I was having trouble standing in the shower and that my toes were painful from my attempting to grip the floor so as not to fall. I was sent for consultation to a neurologist who after examining me sent me for further tests but I went undiagnosed. As I remember the tests were performed while i was sitting. Following an auto accident 5 1/2 years ago which left me with a broken ankle requiring surgery (screws and nails) and a 3 month stint in a wheelchair my symptoms worsened and thanks to this amazing website I discovered that I probably had OT which was later confirmed by a different neurologist. In July I will be 83 yrs old and in spite of everything I remain quite active; I exercise, swim and walk too. I still am able to travel, with airport wheelchair assistance and enjoy playing bridge and attending lectures and concerts. I go to the supermarket online and get the order delivered. Food preparation I accomplish while perched on a stool. Showering ditto. Not easy, but coping is the password.