Surveys of medications/treatments and discussion

Moderator: gloria

I told my GP that my legs tremble when standing still, so badly that it forced me to stop my twice-a-week Ashtanga yoga class, which is fairly vigorous. I can't even hold the 'downward dog' position because my legs will tremble and shake until they collapse. My GP sent me to a neurologist and she diagnosed me almost immediately when she had me stand and placed her hand on my thigh. She went on to do nerve tests and an MRI for brain and spine. I'm still not completely certain that this isn't MS, which my father died from, because I do have some lesions as well as a few other odd neurological issues like unexplained nerve pain shooting down one leg or the other for weeks, and severely cramping feet.
I couldn't walk down the stairs at work. They rushed me to the ER. I could walk on a flat floor but not on stairs, the tremors were horrible. But no one would put me on stairs. Blood work, urine test, blood pressure normal, everything normal. I spent the entire day at the hospital, they wanted me to see a neo. guy that was one of the best in Nashville. Walked in told him that I had noodlely legs. He made me walk. Held my calfs, and thighs and asked me if I felt that shakey feeling? Told me to stand really what a sometimes I can't stand still without having a really bad one. But to go down stairs I turn into a puppet with a horrible puppet master. Does that make sense? So all this is really new like about 6 weeks. I'm on my 2 med. I was falling down and tripping a lot on the 1st one. Glad I found you Connie :D
Connie: Welcome to the website and I am quite surprise at the fast onset of your OT symptoms but they are definitely part of OT symptoms. Has your neurologist given you an EMG? You gave a very good introduction of yourself in your PROFILE when you registered on the website but is there anything in your past you think might have caused the OT onset. Perhaps as you read more of the website something might come to mind. Keep us posted as how you are doing, Gloria
I woke one morning with severe balance and shaking issues ! up until that day I was very active and cycling a few miles each day. I had to stay in bed the first 3 months at least because I couldn,t stand ! Doctor came out to see me and diagnosed me with some sort of menieres desease gave me sea sickness meds (Which didn`t make an iota of difference) So eventualy I ask to be refered to a Neuro, about 6 months after the symptoms started I finaly got the consultation ! After various test and an MRI, they diagnosed MS ! This was approx 15yrs ago, So I tried to help myself by going to an MS therapy center for 3 yrs, I came in contact with a lot of MS sufferers obviously - and none of them had the same symptoms as myself ! So last yr I ask for another consultation with a "new" Neuro, Saw him in Jan this yr 2015 ! I told him I want to be reassessed because I am questioning the MS diagnosos, he done lots of test and sent me for an MRI (That's done now) and I am awaiting for the Neuro to send me a follow up App to get the results ! But after reading the letter he sent to my GP, I saw the words (Orthostatic Tremor) Its was just like reading about myself ! I was gobsmacked :o ...Everything I have read on here was describing me, I never really knew how to describe my symptoms ! But everyone on here has made that job so much easier for me ! Now I have almost self diagnosed myself - and I will tell the Neuro when I go to see him next ! I cant see how he can possibly disagree with me - but I will let everyone on here know the outcome of that next visit (When I finaly get an App for it) Thankyou for listening to me everyone, My journey continues..... Sandra (UKMumma)
I just thought I was getting extra clumsy or something. Already had blood sugar problems, neuropathy, just got over DKA (7/2014). Had previously been diagnosed with ET (2012). I was cooking when my legs started feeling wobbly and suddenly panicked because I was falling. Google let me know ET doesn't really affect legs. So, I found a movement specialist. I explained to her that I was having problems standing, thought I was tripping over my feet while walking, fatigued, felt like I had maggots crawling through my legs, and was constantly in fear of falling.

As soon as she tried to get me to walk heel to toe, I fell against the wall. She grabbed my thighs and exclaimed "oh my! You have orthostatic tremor!" Apparently, this was very exciting as then she called in her colleagues and made them grab my

From the moment I knew something wasn't right to getting diagnosis, just a couple of months (waiting for appt), unless you count the original Neurologist in 2012 who diagnosed me from behind a desk, ran no significant tests, and was otherwise useless.
Told neuro about rapid tremor on lifting legs when seated and descending stairs, extreme fatique, pressure in head,headaches,slowed walking tremor in neck arms and fingers and severe back pain, also what felt like 'deep shivers' going up and down my trunk,feeling off-balance with fear of falling, didn't mention about the crawling feeling on my skin for months before other symptoms appeared because I didn't associate it. On my last appointment after several months of tests and scans, he asked 'what happens when you stand still'? I replied' my legs shake rapidly' he used a stethescope on my legs to confirm his diagnosis of 0.T
Hope this description helps with your survey...Best wishes to you all Dee. x
he asked 'what happens when you stand still'? I replied' my legs shake rapidly' he used a stethescope on my legs to confirm his diagnosis of 0.T
Hi DEEmou

Thank you for adding your experience to these pages!

It sounds like you found a doctor that was a good diagnostician.

all the best.
I told every single doctor(residents and the one in charge) that my legs shook when I stood up and that standing anywhere posed a problem(had to lean on anything available, and it became quite tiring). I did not even want to go out and try and talk to our neighbours or go shopping because of the tremors.
I felt mostly dismissed by all the doctors(except one who suggested physiotherapy); most of them said it was my feet(NO!), and otherwise ignored me.
The only thing that made a difference was the physiotherapist writing a letter to the family doctor saying he felt further testing was necessary(although the first neurologist I was sent to was basically useless--no follow-up with MRI reports, no suggestions for further testing.
Thank goodness my sister(who works for a neurosurgeon) had him review the MRI report and he suggested a further consult with another neurologist that actually has me on meds and is following me. She knew what it was after reading my symptoms, doing her testing and reviewing MRI reports, and was quite amazed that no one had brought up OT as a possibility because they had alluded to it in their report.
Ah, the price of progress!!??
It was difficult to describe what I was feeling at begining , when standing up, when one doesn't know or cannot imagine what is the illness he suffers !
Apart saying I cannot more stand up without leaning on something or someone, I feel tremors under my feet or in legs, I must seat often, I wonder what happens to me Doctor ? I'm afraid to fall down, my balance doesn't exist !
Doctor was surprised and had no answer, he seemed think I was mad, I can see on his face !!! so I stopped to talk about that to him and I searched on Internet, and find, and had an EMG standing up and bingo :! IT WAS A TOP !
When I saw again my doctor with the emg result, he said me : AND NOW ONE MAKES WHAT !!!!
I answered him I'll go to a neurologist now !!!
I had the shakes in my hands and legs. When walking, it felt like it was in slow motion with my legs shaking, or stop motion. I had fallen 2 times as well. Sore muscles and shooting pains. Random muscles firing off. Not the entire calf muscle, just a small part would fire off. twitchy muscles that went on for minuets, caught a video of my leg doing it. loss of balance at times and some vertigo. He seemed to know exactly what I was having from the first visit to the neurologist.

Thanks, will check that out!

Deep Brain Stimulation

I feel the same way about DBS!! Acupuncture works […]

Breast MRI problems

Good to know! Thanks for sharing.

"Participate in a support group"

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