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[gloria]

Hello Rick: I have read your posting over I few times and I'm not quite connecting with a possible OT diagnosis. However is the doctor you are going to a neurologist? If not I suggest that you find one that can evaluate your symptoms and has heard of OT and will give you an EMG to determine if you do or you do not have OT. Please let us know what his findings are, Gloria

[Scottrls60]

Hi Gloria, thank u for responding back, yes I am seeing a neurologist, plus second neurologist at a movement disorder clinic in Pittsburgh,Pa. Which was mention by him as only having 4 other patient as OT. I know I have longer diagnostic testing and observation to still go. As I said full body tremors one happened at night time awoke me no explanation was able to be given, second one was after testing for sugar. Test results were normal if not perfect for my age with that further testing endocology all good. MRI's Ct scans, bloodwork, no sign or hint of anything. Now just when standing tremors in my legs develope if I walk they disappear. I'am a mtce man when in a hurry to resolve a issue they tremors get worse. I have lots of questions to ask later. Thak u.

[DEEmou]

Hi Scott....It's been a while from I posted on the site...I was diagnosed last May with O.T ...I can fully relate to the inner tremors you describe ..mine started off Approx the year beforehand starting like a crawling feeling underneath my skin and sometimes like a vibrating sensation.all over my body..unfortunately When I did see my neurologist I failed to mention it as I didn't make any connection with the leg tremor that I was experiencing which was the reason my g.p had referred me...I can also feel the inner tremor whilst sitting lying in bed my best description of it is i..t's like twinkling fairy lights on a Christmas Tree only under the skin....sometimes it's more like a vibrating/buzzing feeling..it's very rare for me not to experience it throughout my day only distraction makes you less aware of it...I as also told I had upper motor neuron signs...I am currently taking 3600 mg of Gabapentin per day...unable to fully function in my thinking and extremely fatigued..with my G.p I discussed the possibility of reducing my med and we agreed to start by cutting it by 300mg per day but unfortunately that didn't work I started to have sudden jerks in my limbs some mild some more pronounced...I am really confused by my situation at times and try so so hard to remain positive and keep going as best as I can...this forum is so beneficial I am very grateful to know that those here fully understand our situation...best wishes Dee

[DEEmou]

Hi Scott....It's been a while from I posted on the site...I was diagnosed last May with O.T ...I can fully relate to the inner tremors you describe ..mine started off Approx the year beforehand starting like a crawling feeling underneath my skin and sometimes like a vibrating sensation.all over my body..unfortunately When I did see my neurologist I failed to mention it as I didn't make any connection with the leg tremor that I was experiencing which was the reason my g.p had referred me...I can also feel the inner tremor whilst sitting lying in bed my best description of it is i..t's like twinkling fairy lights on a Christmas Tree only under the skin....sometimes it's more like a vibrating/buzzing feeling..it's very rare for me not to experience it throughout my day only distraction makes you less aware of it...I as also told I had upper motor neuron signs...I am currently taking 3600 mg of Gabapentin per day...unable to fully function in my thinking and extremely fatigued..with my G.p I discussed the possibility of reducing my med and we agreed to start by cutting it by 300mg per day but unfortunately that didn't work I started to have sudden jerks in my limbs some mild some more pronounced...I am really confused by my situation at times and try so so hard to remain positive and keep going as best as I can...this forum is so beneficial I am very grateful to know that those here fully understand our situation...best wishes Dee

[Scottrls60]

Thank u DEEmou, Being reasonly affected by tremors, having to navigate thru the ups and downers of something strange in our lifes. Does help talking about it out loud and finding out how other started no different than ourselfs. Still working just getting home will post sometime soon.

[GraGra]

Hi ....My name is Graham and I live in Wollongong NSW Australia. Unfortunately for us Aussie's the forum is mainly for the USA. Anybody that would like to get in touch my email is grawon1@bigpond.com it would be great if you live in or close to the 'gong so that maybe we could meet up. I was diagnosed in 2010 and find medications help a little but it is still a battle every day and I guess made harder because I live alone. If you would like too get in touch please do it by email as I don't visit the forum much anymore.

We are celebrating Australia Day to-day, me by watching the tennis. Good luck with President Trump I guess time will tell and you have to give him a go.

Stay strong, kind regards, Graham

[ElizabethCopelandUSA]

Hello, I'm Elizabeth, snow-birding in Central Florida. I have had OT symptoms since 2002-2003. The neurologist told me in 2007 that no one was doing studies on POT because less than 1% had the condition. He offered no solutions. So I've done the best I could. I've had to sit on the floor in a grocery store, leave my shopping basket behind or desperately ask for a chair in a shop. I travel a lot alone for my business and I've learned to go through the wheelchair line sans wheelchair. It's getting too difficult though to stand in the boarding line. I hate to give in and start using a wheelchair. My sweet husband is amazing and helps me so much when we're together.
My chiropractor sent me for an MRI several weeks ago to see if I had MS. I told her I didn't have MS symptoms but she was curious. She had never seen someone with OT. The report came back that I have a tumor in my brain stem in the cranial nerves and I've had a lacunar stroke. Surprise! I see a neurologist here in Florida tomorrow. He will evaluate and order more tests. I turn 61 on Friday. If any of you are in Florida, you are welcome to come celebrate with me. Happy Valentine's Day everyone. ❤

[gloria]

Elizabeth: Welcome to the forum and happy you are going to a neurologist tomorrow and I hope that he is familiar with OT and will give you a EMG . You are in the mean age of the onset of OT. We do not know the cause of OT and I have had it for 30 years and my health is extremely good without any other issues....... not even headaches. Just the same experiences as you have grocery shopping, etc. Let us know how your visit goes tomorrow. Gloria

[admin]

Hi All -

I have moved an interesting discussion that started here on "Dental occlusion, jaw alignment and OT?" to it's own topic located here > LINK

[Tressa]

Hi everyone.
New to this site!!
Recently diagnosed with OT and prescribed clonazepam 0.5 daily. This is my fourth day of taking and I just wondered if anyone could give me an idea of how long it should be before I see an improvement (if any!). I've had symptoms for three years and am currently reading anything and everything on this condition! Many thanks for any advice anyone can give.

Best wishes

[gloria]

Hello Tressa:
So good to have you say hello to your understanding OT friends. When it comes to adjusting your starting with a med it generally takes a little bit of doing before you find the right dose. You should discuss with your neurologist that you are not getting any sense of relief and any adjusting must be done by your doctor. I'm pleased that you are here with us reading all you can of life with OT. You will not feel alone here and can compare life with OT with many OT'ers.

Looking forward to any of your posting, Gloria

[Tressa]

Hi Gloria
Thanks for your lovely welcome to the group. OT feels like such a lonely journey so it's great to have the support of so many others here. A bit about me .... I'm a 58 year old female living in the U.K. (raining at the moment wouldn't you know!) and was diagnosed in January as having OT although have had symptoms since 2014. I suppose I've been lucky in receiving a diagnosis so quickly as I've read that many people on this site struggled for many years to finally get their diagnosis. Its early days with the clonazepam but as yet I cannot feel any difference in my tremor but I'll stick with it and keep you all posted!

Best wishes to you all.

[Nellis]

Hello,

My name is Laura. I have been referred to a neurologist and can't get in for a month. My daughter has been scouring the internet because I recently started having tremors in my arms and legs. The symptoms in my legs are exactly as described on this site. But do any of you have consistent, visible tremors in your arms? I'm terrified and while I know I need adoctor for diagnosis it would be helpful to hear of others with my symptoms. Thanks and God bless.

[renaely]

Hello,

My name is Laura. I have been referred to a neurologist and can't get in for a month. My daughter has been scouring the internet because I recently started having tremors in my arms and legs. The symptoms in my legs are exactly as described on this site. But do any of you have consistent, visible tremors in your arms? I'm terrified and while I know I need adoctor for diagnosis it would be helpful to hear of others with my symptoms. Thanks and God bless.

Hi Laura. It's not uncommon. It is primarily noticeable in my legs, but it moves to my trunk and arms, especially after standing for too long. It's as if it just moves upward, AND the harder you "try" to quit shaking, the worse it would get. I also have hyperreflexia, so my right wrist and elbow would spasm so hard when I had overexerted or got upset (and it is hard not to get upset), that I looked more like I had palsy or something similar. Just remember, it's gravity-induced and load bearing. So while it seems counter-intuitive that you should not be able to (for example) get on your hands and knees and scrub something, it's just as easy to fall over doing so. I've had DBS implants, so for the most part, my tremor is MUCH better and I can mostly speak in past tense, but it's terrifying when you suddenly realize you haven't just become more clumsy, there is something terribly wrong.

PS. Be careful on the Clonopin, it's physically addictive and causes withdrawal, even at .5. When/if you are ready to go off it, get some Valerian Root from your local nutrition store or pharmacy to help titrate off it. Also, Valerian Root is what I used to quell the tremor when I first became aware of it. Any CNS depressant will work to reduce the tremor.

Rena

[Nellis]

Thank you very much Rena.