Surveys of medications/treatments and discussion

Moderator: gloria

As a result of the recent survey Link that found that it takes on average 7 years in the US and 5 years in the UK to be diagnosed with a rare disease, let's see what we can do to lessen that time frame.

It's easy to search for OT on the internet if you know what you are searching for, but what if you are searching for a feeling or sensation before you knew it was OT. How did you describe it to your Doctor? "a jelly-like feeling of the legs on standing" ? There isn't a right answer here, just the feeling, and how you expressed it in words.

The descriptions that you used may have been simple, unusual or even .... weird, they are all welcome. But, they may be the exact words of someone that is walking into a doctors office right now.

Let's see if we can help people that are searching for answers, reply to this post with the words and thoughts that you used before you knew it was OT:

Doctor, I have this feeling______________
Doctor, I'm worried..
When I stand I start to shake. Is it ALS? Is it Parkinson? It only happens when I stand and it's only in my legs - but both legs at the same time.. Noting in arms and hands. It's so strange!

In my case I was lucky. I was immediately transferred to a Neurologist who knew what this was. I was diagnosed within a month (delay to get to the neurologist only).

Addition: I understood during summer 2009 something was very wrong. Reached out to a doctor in October and was diagnosed in December.
Looking back I think I've had tremors for 4-5 years or so before it "broke out" - but then very little, just as a small discomfort suggesting sitting down would be more comfortable. I hade sensed tremors a couple of times earlier over the years, but disregarded it, told myslef it was fatigue, lack of sleep, lack of water whatever.. But that summer it became very obvious..

Last edited by golfnut on Thu Apr 18, 2013 3:00 pm, edited 1 time in total.
>I was diagnosed within a month (delay to get to the neurologist only).
That's a great idea to also post how long it took for you to be diagnosed. Even if you have already described this before in other posts. Having it all in one discussion may be very helpful.

The goal is to have a mini-database within this discussion that would help someone that is searching for similar "feelings" and possibly to get an idea of whether this 5-7 year timeline to diagnosis of a rare disease is correct for OT. Although I would guess that someone looking to be diagnosed today would have a very different result than what it was 10 years ago.
Doctor, I have a jelly like feeling in the tops of my legs, especially when standing, was my first explanation of what was happening to my body.

That was in early 2007. I had some blood tests which showed my iron levels were down so went on medication. My thyroid levels were also a little low so I had another blood test three months later which showed no improvement, so more medication.

After surgery in August 2008, the shakiness reappeared, much worse, so back to the Doctor two weeks after surgery - wanted to give my body time to recover from surgery. Doctor, I have that same jelly like feeling in the tops of my legs and also a weakness in my hands/arms leading to clumsiness (dropping things). The Doctor believed it was just part of the recovery process from surgery.

In November 2008 I had another event - Doctor, I bent down to pat the dog (I was standing at the time) and when I stood up I lost my balance. My legs felt like they were racing and I had no control over them. I headed to the nearest wall to lean on as I thought I was going to fall.

I was then seen by a general Specialist who suggested that I see an Otolaryngologist as he believed it was an inner ear problem. Saw him in late January 2009 and within five minutes of seeing me walking across the room and almost falling when asked to turn around, he said I needed to see a Neurologist. He also ordered an MRI on my head (which came back showing nothing wrong).

I was finally diagnosed in June 2009 by a Neurologist - five month wait to see a Neurologist is not uncommon in New Zealand. I had a one hour appointment with the Neurologist and in that time he was able to diagnose OT.

Hope this helps someone!!

“Doctor, I used to think the shaking legs was a symptom of post traumatic stress (having had a 2-3 years of stressfull events following a natural disaster (bushfire)) but now I realize that it occurs more frequently and at times when there should be no stress like watering the garden, cooking, showering shopping etc. There is definitely an extra layer of intensity when there is something stressful going on, low blood sugar, excitement but I now think there must also be something else underlying it. “

The general practitioner referred me to a neurologist. I started looking on the internet for variants of ‘trembling legs’, ‘shaking legs’ and finally found ‘Shaky legs syndrome’ which then led me to this OT site. The symptoms seemed to fit, what a relief. I went to the neurologist expained the symptoms but did not mention my suspicion. He did some in-office tests and diagnosed definite Orthostatic Tremor. Ordered an MRI of the brain and prescribed gabapentin. He said it was a rare benign movement disorder he had seen only two previous patients with OT in his many years of practice. I went back about a month later the MRI showed nothing useful. I thought there was slight improvement with the gabapentin. He was surprised as he didn’t think it would make much difference and was expensive. Said I could choose to keep taking it or not, there wasn’t anything more he could really do, just learn to live with the condition, the GP could give me a further script for gabapentin but I didn’t need to come back to the neurologist unless there was another problem.

I stopped taking gabapentin as I thought the side effects did not justify it and have tried to soldier on, adjusting my lifestyle. Got a shower stool (great help) and modified where I went and when. I have found most doctors and nurses have never heard of OT and are quite dismissive. Oh yes something to do with standing, don’t worry about it. They cannot appreciate and are not interested in the quality of life issues.

The severe pain following an unexpected requirement to stand for a long period, the feeling like the muscles have been shaken off my shins, cramps in the feet, and lower back, extreme distress which takes several days to recover. Standing in queues is a nightmare, dancing at the checkout, getting angry and distressed, finding it difficult to sign or write anything after standing for a while. Doing housework is exhausting try doing something for 10 minutes, then rest 10 minutes. Vacuuming is an endurance exercise.

Timeframe : before 2003 only noticed similar symptoms during very stressfull events; 2003-2005 happened often but there were a lot of stressful things happening so put it down to that plus post traumatic stress, 2006 started to notice that it was still happening and associated with non-stressful situations as well, diagnosed early 2007.
My history goes back so many years to the time when trying to get a diagnosis was way over the time frame of 7 to 5 years of today, mine was in the 18 to 19 year range.

Speaking to doctors for years I would say : “ I do not understand why my legs feel so strange I can walk but when I’m standing in one spot my legs begin to feel shaky with straining legs that become hard and stiff like a feeling of stumps freezing in position . At this point my toes are curling under trying to grip the ground. To break from all of this I must start walking which is difficult to start or sit down. I have a sense that I have a balance problem because I can not reach up and do things like hanging curtains as an example , make quick turns of motion or go down stairs without banisters. Being in crowded situations or standing in lines are impossible “

Thus my symptoms go back to the early 1980’s. At that time I was also having back problems in the mix of symptoms.. However, after back surgery in 1992 the symptoms of back pain and leg pain going down to my ankles subsided BUT my other long undiagnosed symptoms of OT remained and the surgeon felt there might have been two different problems going on and sent me to a neurologist who misdiagnosed me with Parkinson’s . After two years of being treated for Parkinson’s my symptoms became worst. So the search continued ...... saw five 5 more neurologist who did not have a clue but finally went to Columbia Presbyterian in NYC at the end of 1999 was examined and tested with an non-invasive EMG , the results the diagnosis of OT.
Hi all
I once told my Doctor that my leggs felt similar to when you first get out of a swimming pool.
Very heavy and hard to move them.
That did not get me very far.
The problem i was finding was when i would force myself to stand imy blood pressure
when sky high. That really confused the Doctors
Three years before i got a diagnosis. And i have my daughter to thank for that.
She went with me to my Doctor and insisted i needed to see a neurogolist.
I had seen several other specialists.
The EMG test told the answer.
rRegards to all
Hello, I saw my general practitioner 1st and she did a few neurology tests and could see how shaky I got when standing still. She referred me to a Neurologist. My wonderful Neurologist asked me, Mrs. Betti, what problems are you having. I told him that I could not stand still wihout my legs quivering really bad to the point where I felt I could not stand. I have to sit down. Then I felt ok. Also if I am moving (walking) I feel ok, no shaking. He ran me through a battery of tests and then wanted me to stand with my feet together. Almost impossible for me. I put my feet slightly apart and within seconds they were really shaking. The Dr. could feel that the tremor moved up into the core of my body and even to arms and hands before I just had to sit down. He took a standing blood pressure and it sky rocketed 150/92. I also got red faced and sweaty. My toes curl and try to hang on for dear life. I've had these symptoms for 6-7yrs to a lesser degree but they have worsened in the last 2 months. I think stress plays a part here. My Neurologist said, "I know what your problem is". "It is very rare and in fact you are the 1st patient I have ever had in my practice". "It is called Orthostatic tremor and I know you will look it up when you get home". He prescribed me a low dose Clonazepam to take once a day for 3 days and if I didn't get improvement from that to up it to 2 pills a day. I cried all the way home at the relieve of knowing I had a "real" something.....that I was not crazy. The Clonazepam is helping me. Today, my fourth day on it there is alittle more tremor back so after a week I'm going to see if 2 pills will work better. I have such sympathy for people who take such a long time to get diagnosed. It is kinda a weird disease. Thank You, It's nice to be a member of this forum. P Betti
Hello P Betti:
Welcome to the website and thank you for reporting the words you used to describe “ the symptoms" to doctors at a time when you were living with something without a name and how long it took to get the name OT. The information and descriptive words all of you ( new members and old) used at that time will help those still searching to find the website. This is an important process so join in everyone!

Thanks, Gloria
Hello, While having all th OT symptoms I did many google searches. I would search things like "weak shaky legs when standing" or just "weak shaky legs with fatigue" Never did Orthostatit tremor come up. I am 64 now but I'm pretty sure I've had this since late 50's. I am not one to go to a doctor much so I put off ever describing my symptons to any doctor. It's the old story, I advocate for my kids and husband to see the doctor but not myself. P Betti
Hi - I'd been complaining of this for years to my doctor. He goes to my church and I'd talk about trying to stand at the coffee after church and having shaky legs and not being able to stand for a long time. I'd also describe it as trying to walk on ice (being in Wisconsin, we all have a lot of experience with the feeling of trying not to fall walking over slippery surfaces.) He'd give me the typical balance tests but didn't know what else to look for.

Then several years ago I tried to push it because I REALLY wanted to talk to someone at church. I finally leaned on a table, and promptly fainted, hitting my head on the way down. That brought on a hospital stay with lots of tests regarding my heart. And trying to explain the shaky feeling on standing. Lots of tests and a Tilt Table test to see if my blood pressure dropped when I stand. But I was strapped to a table the whole time, and I kept telling them that the problem was only when I was standing unsupported. But they were heart people and didn't listen either. Then during the test they gave me some synthetic adrenalin and I started shaking so violently that they had to stop the test. But being heart specialists . . . . again no follow up.

Finally with my last Dr. visit, I complained of the shaking and standing getting worse and the Doctor could see a little visible tremor, so he finally sent me to a Neurologist mentioning motion disorder. I Googled it and finally found OT. When I saw the Neurologist who specialized in Motion Disorders, I told her I was pretty sure what I had and she confirmed it.

The other way I'd been describing it was anxiety. I've had some depression starting about the same time as the shakiness and the symptoms appeared to be anxiety to the Psychiatrist. So I'd try some anxiety meds and the symptoms would get a "little" better which would confirm it as anxiety. I wonder how many people with Social Anxiety or GAD (General Anxiety Disorder) might really have OT.

Anyway, I'm trying to sort it all out now. I'm so grateful I finally have a diagnosis that is accurate! And grateful to this site for providing so much valuable information!
Thank you for everyones ideas and thoughts on presenting OT. It is a challenge to describe and verbalize the sensation and feeling of OT, but as a result of your help we have increased the descriptions that will now be able to be searched on the web. And, hopefully found by people that have yet to receive a diagnosis. What may have seemed like a little task, may have a big impact on someone's life. thank you.

If anyone else has any other ideas please continue to post your thoughts... how did you describe OT?
Hi pbetti,
You describe the symptoms of OT very well. I was initially diagnosed with panic disorder because I described my legs shaking on standing. If unable to sit down somewhere or lean against something, shaking of my whole body would follow. This did cause me social anxiety and I avoided many social situations. I still experience panic when I enter a room where there is nowhere to sit down. Australia is very much a stand up and socialise at a barbecue society. I then had anxiety and social phobia recorded on my medical record and doctors were dismissive of my shaking complaint.
I eventually asked for a referral to a neurologist who diagnosed OT on first consultation. I have been diagnosed for 8 years now and have used clonazepam to dampen symptoms. Four years ago I was also diagnosed with essential tremor and prescribed inderal for shaking in my hands. This has been successful. Unfortunately my first lovely neurologist is no longer consulting.
Lately I have experienced progress of orthostatiac tremor and have also been diagnosed by a new neurologist with Parkinsons symptoms including stiffening of the body and heavy slow movements and unexplained pain in the legs. Apparently all 3 movement disorders can exist together! I am currently waiting for an MRI scan to check all brain structures. My current neurologist has dismissed orthostatic tremor progress with advice to avoid all situations which bring on symptoms and medicate for parkinsons. This is advice which causes isolation as you would all know that avoidance is not always possible. Fortunately I have a partner who will help me with banking, shopping etc. These tasks must be really difficult for OT sufferers who live alone. I do get frustrated by inability to accomplish household tasks like vacuuming and washing floors. As Nini said, they become an endurance test. I am hoping to get sorted out soon!
I went to family doctor, because I had extremely fast tremor in my left leg above my knee cap, when in the shower! Then it started doing it in both legs. I thought it was anxiety , because it got really bad when standing at cocktail party or just standing and talking to someone. The minute I sat it stopped. If unable to get somewhere and sit, my whole body would start to tremor terribly! I also have in my arms, if have to keep them static against something. I was happy to hear that someone else say they could not stand on ladder or even small stool. Or do anything with arms above my head, like decorate a x-mas tree! My whole body goes nuts, with shaking! Also can't sign signature , when standing. I mostly just scribble it real quick..
I went to my family doctor and described a 'funny feeling' in my legs when I tried to stand still, like in a queue or if a neighbour stopped to talk to me on the street. I had to excuse myself and walk on. He suggested restless leg syndrome which my wife strongly disagreed with because that seems to be quite the opposite - the legs experiencing discomfort when sitting or lying. I said it was like trying to walk on deep sponges. Essentially the neurologist diagnosed Essential Tremor, which diagnosis they stuck to until the 'Helicoptor Rotor' was heard.

Thanks, will check that out!

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Hola to you too. But, No se habla Espanol.