Hello Chris, and welcome!
You have found a wonderful site to ask questions and hopefully get some answers. This is a very caring group and we know what you are experiencing.
So sorry to hear you had such a terrible reaction to Clonazepam; I do take that with no ill effects at all, but we are all unique and different. I am unable to tolerate Gabapentin, but I find reading others comments, it seems to be the one medication which seems to help most. I am not familiar with Pregabalin; perhaps others are and will comment.
You seem to be very active, which is wonderful....but so sorry to hear about your unfortunate accident with your large bike. Hopefully, by summer, you will be able to ride one of your other bikes. Great exercise for you.
Do keep us posted.
Betty
New to the forum? post a quick introduction
Moderator: gloria
Re: New to the forum? post a quick introduction
Hi, I am new to the forum. I was diagnosed about two and a half years ago with both Propriospinal Myoclonus And Orthostatic Tremors. This has changed my life dramatically. It is so difficult when nobody understands what we are going through. I have seen Neurologists that told me to go home and take a tranquilizer. I was fortunate to have found a neurologist to diagnose me within minutes and give me treatment. I am taking 1 mg Klonepin and 1500 mg of Keppra daily, along with blood pressure meds. I have been fairly well controlled but lately my symptoms have worsened. I am wondering if food and chemicals are affecting my condition. I avoid chemicals and food coloring, but trying to figure out if certain foods provoke the symptoms, I tried a bit of very slow Tai Chi walking and my tremors began acting up. It is somewhat comforting to know that I am not experiencing this alone, although my doctor said that if I want a support group, with both rare conditions, I would be in a support group of one.
Re: New to the forum? post a quick introduction
Welcome to the forum, Phyllis,
You have found a wonderful site and many, many people who will be of tremendous support to you. We all understand what you are experiencing with your OT, but I don't imagine many can relate to Propriospinal Myoclonus. I had to look that one up! In case any others are as inquisitive as I, I have added a link: http://www.neurology.org/content/72/15/1301.abstract
My goodness Phyllis, you seem to have a "double whammy"; but I feel you will be able to learn to cope with what is going on, even though it has changed your life dramatically. Having OT alone is life altering; but a second condition is even more difficult.
You mentioned lately your symptoms have worsened; I can't speak for anyone but myself, but I too, find I am deteriorating as time goes along. Most neurologists, who have had any experience with OT will tell us, OT is a progressive condition. Even on the Introduction page of this site, Gloria has written this IS a progressive condition. Some progress more quickly than others; so try not to dwell on that; think about all the things you are still able to do.
As for a support group......you have found a very large one right here!
Continue to keep us posted and if you have any questions, I feel someone will try to answer it for you.
Betty
You have found a wonderful site and many, many people who will be of tremendous support to you. We all understand what you are experiencing with your OT, but I don't imagine many can relate to Propriospinal Myoclonus. I had to look that one up! In case any others are as inquisitive as I, I have added a link: http://www.neurology.org/content/72/15/1301.abstract
My goodness Phyllis, you seem to have a "double whammy"; but I feel you will be able to learn to cope with what is going on, even though it has changed your life dramatically. Having OT alone is life altering; but a second condition is even more difficult.
You mentioned lately your symptoms have worsened; I can't speak for anyone but myself, but I too, find I am deteriorating as time goes along. Most neurologists, who have had any experience with OT will tell us, OT is a progressive condition. Even on the Introduction page of this site, Gloria has written this IS a progressive condition. Some progress more quickly than others; so try not to dwell on that; think about all the things you are still able to do.
As for a support group......you have found a very large one right here!
Continue to keep us posted and if you have any questions, I feel someone will try to answer it for you.
Betty
Re: New to the forum? post a quick introduction
Thank you, Betty. I did feel very alone and now have found that there is a supportive group who understands. Now, as far as being progressive.....I was living in a very stressful situation for about five years, and had moved this summer. After I moved, I began feeling so well, I had to pinch myself to believe that there was so much improvement. I didn't know what to attribute it to - whether our previous house was somewhat toxic or whether the stress was gone. All I knew was that I felt almost normal and even able to walk my dog once again. But recently, the symptoms started returning, and it has been very depressing, since I actually thought I had improved so much. I made an appointment with a top specialist in the area for tomorrow. I always believed that food affected my condition and have been eating some processed food lately. I am always trying to research to find some sort of answer. i have had some bad episodes of propriospinal myoclonus in a restaurant after eating certain foods which contain yellow dye and couldnt walk out without people holding me up. Some time ago, I did Feldenkrais, and I found it very helpful. I had seen a YouTube video. I don't know how to post it here, but if you search on YouTube for Feldenkrais Anat Baniel, you will see a video of how she helped an infant who was born with 1/3 of her brain missing and was not supposed to talk or walk. They show how this girl progressed and is now a teen who is walking and talking due to exercises which bring about some kind of rewiring.. It is quite amazing and after watching, it gives me some hope and incentive that perhaps the condition can be overcome to a certain extent, and the fact that I had such improvement, perhaps it can happen again. Meanwhile, it is so difficult not to let depression set in. A new neighbor invited me to meet some people today, and I am unsure whether to take a chance and go, or to stay home and rest. This disorder has made me so unreliable and it is difficult to socialize. Thank you so much for the opportunity to vent.
Re: New to the forum? post a quick introduction
Phyllis: Thank you for posting for we all learn from each other and sometimes like you we have other conditions that make our travel through life more complicated. I don’t think you are afraid of challenges and that is what we must do so OT and in your case PSM too, does not CONTROL our lives. You mentioned stress and any kind of stress both good or bad we will react to but after time you will learn to deal with it and make it doable .
You mentioned food , certainly it might not arrive at a cure however I believe that we need to establish a healthy diet to maintain a healthy body and WATCH our weight. It is good idea to experiment as you are doing. You also said your new neighbor invited you to meet some people and you were not sure about going. I believe that you should go, it is true we are nervous about a new environment but here you will get a chance to explain your problem and have a new circle of friends.
Socializing is a difficult but you need to establish an environment to live a more comfortable life, not easy but worth the effort. Daily walking is very important for leg muscle/nerve maintenance. I find chair yoga is great for stretching.
Nice to hear from you and keep up the good work, Gloria
You mentioned food , certainly it might not arrive at a cure however I believe that we need to establish a healthy diet to maintain a healthy body and WATCH our weight. It is good idea to experiment as you are doing. You also said your new neighbor invited you to meet some people and you were not sure about going. I believe that you should go, it is true we are nervous about a new environment but here you will get a chance to explain your problem and have a new circle of friends.
Socializing is a difficult but you need to establish an environment to live a more comfortable life, not easy but worth the effort. Daily walking is very important for leg muscle/nerve maintenance. I find chair yoga is great for stretching.
Nice to hear from you and keep up the good work, Gloria
Re: New to the forum? post a quick introduction
Hello again Phyllis,
I totally agree with Gloria; you should accept the invitation from your new neighbor. You may be surprised how understanding people can be when they are informed about OT. I think we all hesitate to go to new places with new people, but we must continue to try.
Since you live in New York, perhaps you are near enough you could make arrangements to meet some others who also have OT. There are several in New York and New Jersey. If you haven't met another person with OT, you would find it an invaluable experience.
Keep us posted on how you are doing....
Betty
I totally agree with Gloria; you should accept the invitation from your new neighbor. You may be surprised how understanding people can be when they are informed about OT. I think we all hesitate to go to new places with new people, but we must continue to try.
Since you live in New York, perhaps you are near enough you could make arrangements to meet some others who also have OT. There are several in New York and New Jersey. If you haven't met another person with OT, you would find it an invaluable experience.
Keep us posted on how you are doing....
Betty
Re: New to the forum? post a quick introduction
Hello all -
I'm new as a member to the forum but have been following it since 2006 - thanks Gloria for starting it and keeping it going all this time. It truly has been a huge help to me and others with OT! I come to this forum for reassurance that I'm not alone and more often than not also as a reminder that there are worse things we could be dealing with (ALS, Parkinsons, etc).
Onset of OT was around 12 years ago for me at the age of 44, and as for many others it took me 6 years to get diagnosed. Finally, with Gloria's description of OT in hand I found a doctor that would listen and she referred me to the Mayo Clinic here in AZ. The Neurologist there diagnosed it right away and put me on Neurontin, which I stayed on for all of 1 week before stopping it due to the side effects. He didn't seem to want to work with me to find a different medication that I could tolerate, so since then I've become a master at using coping methods in most situations and am only now starting to think I may need to seek out medication again. One of my favorite tools is the 3-legged Walkstool, which is a constant companion during any travel now and has saved me in many a place and particularly in those airport lines (mazes) -- I plunk it down at the end of one of the rows and wait for my husband, then move to the next row as he does and wait for him to come around again. It's a great way to relax in a long line, plus meet people and socialize (as everyone is always interested in the stool and why I need it).
I still manage to lead a reasonably active life as I'm able to hike and kayak in the nearby mountains and try to do so as often as possible (although I'm not fond of the high ledges that you sometimes come across on hikes due to the stability issues with OT). I also have a fairly stressful job right now and find that my OT has progressed with the stress, which is why I'm thinking about seeking out another Neurologist and a different medication. My biggest issues with OT have come along in situations where my adrenalin increases (speaking in public, etc) and my worst was just a couple weeks ago when there was a fire drill at my office. I work on the 6th floor of a 25-story building and when I opened the stairway and saw all the people rushing down (no one was sure it was a drill) my adrenalin shot up and my OT went into overdrive. I made it down 5 of the flights of stairs on my own, but the sixth I couldn't do (didn't help that I had 3-inch heels on). Some large kind man behind me just grabbed me and gently said "I've got you" and helped me down that last flight. My muscles hurt for days afterward, and I've also had a nearly constant tremor in my right hand since then that I didn't have before (now I have essential tremor too, really??) What a shock it was to have my body betray me like that (I don't usually have any issues with stairs as long as there is a rail nearby), but it is much better to find out what will happen during a drill than to be caught off-guard with it during a real emergency.
One other note before I sign off: Not sure if I read about it here or in another place, but I find the iPhone app iSeismometer to be a great way to show people (including doctors) exactly what you are telling them about your tremors. Turn it on - have them stand and hold it to their leg (no movement on the iSeismometer). Then stand and hold it to your leg (looks like an earthquake!!). The light goes on in their eyes and I've found that even the people who have helped me cope for the last 12 years seem to finally "get it."
So that's my story. I've been reading yours for years and thought it was time to share too.
Happy New Year everyone!
the link to the iSeismometer information:
http://www.orthostatictremor.org/phpBB3 ... ?f=1&t=628
I'm new as a member to the forum but have been following it since 2006 - thanks Gloria for starting it and keeping it going all this time. It truly has been a huge help to me and others with OT! I come to this forum for reassurance that I'm not alone and more often than not also as a reminder that there are worse things we could be dealing with (ALS, Parkinsons, etc).
Onset of OT was around 12 years ago for me at the age of 44, and as for many others it took me 6 years to get diagnosed. Finally, with Gloria's description of OT in hand I found a doctor that would listen and she referred me to the Mayo Clinic here in AZ. The Neurologist there diagnosed it right away and put me on Neurontin, which I stayed on for all of 1 week before stopping it due to the side effects. He didn't seem to want to work with me to find a different medication that I could tolerate, so since then I've become a master at using coping methods in most situations and am only now starting to think I may need to seek out medication again. One of my favorite tools is the 3-legged Walkstool, which is a constant companion during any travel now and has saved me in many a place and particularly in those airport lines (mazes) -- I plunk it down at the end of one of the rows and wait for my husband, then move to the next row as he does and wait for him to come around again. It's a great way to relax in a long line, plus meet people and socialize (as everyone is always interested in the stool and why I need it).
I still manage to lead a reasonably active life as I'm able to hike and kayak in the nearby mountains and try to do so as often as possible (although I'm not fond of the high ledges that you sometimes come across on hikes due to the stability issues with OT). I also have a fairly stressful job right now and find that my OT has progressed with the stress, which is why I'm thinking about seeking out another Neurologist and a different medication. My biggest issues with OT have come along in situations where my adrenalin increases (speaking in public, etc) and my worst was just a couple weeks ago when there was a fire drill at my office. I work on the 6th floor of a 25-story building and when I opened the stairway and saw all the people rushing down (no one was sure it was a drill) my adrenalin shot up and my OT went into overdrive. I made it down 5 of the flights of stairs on my own, but the sixth I couldn't do (didn't help that I had 3-inch heels on). Some large kind man behind me just grabbed me and gently said "I've got you" and helped me down that last flight. My muscles hurt for days afterward, and I've also had a nearly constant tremor in my right hand since then that I didn't have before (now I have essential tremor too, really??) What a shock it was to have my body betray me like that (I don't usually have any issues with stairs as long as there is a rail nearby), but it is much better to find out what will happen during a drill than to be caught off-guard with it during a real emergency.
One other note before I sign off: Not sure if I read about it here or in another place, but I find the iPhone app iSeismometer to be a great way to show people (including doctors) exactly what you are telling them about your tremors. Turn it on - have them stand and hold it to their leg (no movement on the iSeismometer). Then stand and hold it to your leg (looks like an earthquake!!). The light goes on in their eyes and I've found that even the people who have helped me cope for the last 12 years seem to finally "get it."
So that's my story. I've been reading yours for years and thought it was time to share too.
Happy New Year everyone!
the link to the iSeismometer information:
http://www.orthostatictremor.org/phpBB3 ... ?f=1&t=628
Re: New to the forum? post a quick introduction
Hi! Joan:
Thank you for your report on your history with OT. Registering and giving your experiences has helped through the years to confirm our OT life. Our coping skills are determined by our personal life styles and I must say my favorite " out of the house one" is like yours the 3 legged cane stool. Even at my age it helps me to maintain independence for lite errands . Your stress factor experiences are unfortunately the same reaction for all OT people and correctly adrenalin is running strong. Coming down stairs is always a great challenge for OT but doing it in 3 inch heels and 5 flights, all I can say is WOW! Also under most stress situations we do have additional tremors throughout our body. Happy to see you are maintaining a good physical practice. Yes, you can be reassured that you are not alone and we welcome you aboard. Gloria
Thank you for your report on your history with OT. Registering and giving your experiences has helped through the years to confirm our OT life. Our coping skills are determined by our personal life styles and I must say my favorite " out of the house one" is like yours the 3 legged cane stool. Even at my age it helps me to maintain independence for lite errands . Your stress factor experiences are unfortunately the same reaction for all OT people and correctly adrenalin is running strong. Coming down stairs is always a great challenge for OT but doing it in 3 inch heels and 5 flights, all I can say is WOW! Also under most stress situations we do have additional tremors throughout our body. Happy to see you are maintaining a good physical practice. Yes, you can be reassured that you are not alone and we welcome you aboard. Gloria
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Dwight Kraai
- Posts: 27
- Joined: Fri Jan 23, 2004 2:19 pm
- Location: Deerfield Beach Fl.
Re: New to the forum? post a quick introduction
Hi JoanC and other OT friends.
JoanC wrote:
"One other note before I sign off: Not sure if I read about it here or in another place, but I find the iPhone app iSeismometer to be a great way to show people (including doctors) exactly what you are telling them about your tremors."
I have an iphone 5 and downloaded the app iSensometer. It took a while to get used to, but, not too bad. I decided to test the iSensometer with my ET. Holding my iphone in each hand It came up perfectly with a tremor of about 6Hz on several tries. OK, I assumed that it works. Next I held it to my leg. Problem. I kept comming up with 6Hz not the 14 to 15 Hz expected. In a side email JoanC said try straping the iphone to my leg. Take my hands off it as it is probably primarily picking up my ET tremors from my hand.
Guess what. Strapped to my leg I got 14 to 15Hz, exactly as expected.
Thanks JoanC for your astute observation and side correspondance.
Dwight Kraai
JoanC wrote:
"One other note before I sign off: Not sure if I read about it here or in another place, but I find the iPhone app iSeismometer to be a great way to show people (including doctors) exactly what you are telling them about your tremors."
I have an iphone 5 and downloaded the app iSensometer. It took a while to get used to, but, not too bad. I decided to test the iSensometer with my ET. Holding my iphone in each hand It came up perfectly with a tremor of about 6Hz on several tries. OK, I assumed that it works. Next I held it to my leg. Problem. I kept comming up with 6Hz not the 14 to 15 Hz expected. In a side email JoanC said try straping the iphone to my leg. Take my hands off it as it is probably primarily picking up my ET tremors from my hand.
Guess what. Strapped to my leg I got 14 to 15Hz, exactly as expected.
Thanks JoanC for your astute observation and side correspondance.
Dwight Kraai
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margie1930
- Posts: 12
- Joined: Tue Jan 29, 2013 4:40 pm
Re: New to the forum? post a quick introduction
I am new to the forum and wonder if anyone is using clonazepam and primidone. I have been
on clonazepam for several years (0.5 mg. twice a day and don't get too much help. I recently read
reports of using primidone and plan to add it to the clonazepam. Has anyone had experience with
this combo?
on clonazepam for several years (0.5 mg. twice a day and don't get too much help. I recently read
reports of using primidone and plan to add it to the clonazepam. Has anyone had experience with
this combo?
-
margie1930
- Posts: 12
- Joined: Tue Jan 29, 2013 4:40 pm
Re: New to the forum? post a quick introduction
I just returned from my 3 mile daily walk. why can I walk 3 miles, but can't stand in the shower?
I am interested in the magnetic resonance work being done in Australia and the ultrafocus work at
UVA on essential tremor and wonder why I can't find anything being done in this country on OT. I would be happy to hear of it if anyone knows of something. Thank you for listening and to you Gloria
many thanks. Margie
I am interested in the magnetic resonance work being done in Australia and the ultrafocus work at
UVA on essential tremor and wonder why I can't find anything being done in this country on OT. I would be happy to hear of it if anyone knows of something. Thank you for listening and to you Gloria
many thanks. Margie
Re: New to the forum? post a quick introduction
Margie:
Thank you for registering on the website , it is important for all who have OT to do so to show the research and medical community of our true existence. As you read more of the website you will understand how we have had a difficult history of trying to find a diagnosis or being misdiagnosed .
Please read about our meeting/study in Omaha, it will be the largest study ever on OT. However, the more research on OT the better no matter where it may be.
I’m so happy that you are a walker, that is the best exercise I have found to maintain our misguided leg muscles. As far as medicines are concern there is nothing on the market to stop the tremors completely, most only moderate them.
Please post more of your history with OT, you now have a host of friends that really UNDERSTAND ! Gloria
Thank you for registering on the website , it is important for all who have OT to do so to show the research and medical community of our true existence. As you read more of the website you will understand how we have had a difficult history of trying to find a diagnosis or being misdiagnosed .
Please read about our meeting/study in Omaha, it will be the largest study ever on OT. However, the more research on OT the better no matter where it may be.
I’m so happy that you are a walker, that is the best exercise I have found to maintain our misguided leg muscles. As far as medicines are concern there is nothing on the market to stop the tremors completely, most only moderate them.
Please post more of your history with OT, you now have a host of friends that really UNDERSTAND ! Gloria
Introduction from Rhonda
below is an introduction from Rhonda
Hello from Southeast Alabama,
I am 57 years old, twice retired, and began having leg tremors July, 2012. Also have essential tremors less severe in hands mainly which must be inherited from my 81 year old mom. Initially, my internist primary doctor thought the leg problems were from my lumbar and ordered a lumbar MRI, referred me to my neurosurgeon. I was diagnosed with lumbar problems 2005-2006 but have never had any surgery, just epidurals and physical therapy, and have made many modifications in how I did things.
After I retired fully July, 2011, I sought answers for the severe headaches in back of head. MRI of cervical region showed herniated discs and neurosurgeon put me on neck traction three times daily which helped significantly. That was Dec 2011 - March 2012. So I was living life retired, traveling with my husband who also was retired when these leg tremors began in summer 2012, very gradually, but I started leaning on walls, counter tops, looking for walls to hold, avoiding shopping, curling my toes all the time to hang on, very unbalanced when standing, etc. When referred to my neurosurgeon Dec 2012, he observed me and told me I did not have a problem with my legs coming from my lumbar but a problem coming from my brain. He initially diagnosed ET and referred me to a neurologist. Neurologist observed me, diagnosed OT plus, but did order a brain MRI as I had a history of melanoma many years ago. He wanted me to start on Klonopin but I chose to try Neurontin since Klonopin was addictive. Had the brain MRI 01-02-13 and it revealed a venous anamoly with a cavernoma that had bled at some point located deep in the brain at corpus collusum.
Neurologist sent me back to my neurosurgeon who ordered a CTA and the CTA confirmed the neurosurgeon's diagnosis of a cavernoma in my brain. Neurologist had suspected an AVM on reviewing the brain MRI. The neurosurgeon will do another brain MRI in 6 weeks and says can't touch the cavernoma as too deep and the neurological deficits would be great, referred me back to neurologist who will work with me on the OT plus motion disorder. After taking the Neurontin for 4 weeks, neurologist is gradually switching me to the Klonopin which I agreed to try. The Neurontin had side effects which made it not possible for me to drive safely but it did help with the severity of the leg tremors and had a calming effect. However, even on Neurontin if I became stressed or anxious, the tremors increased. The neurosurgeon thinks there is a connection between my leg tremors and the left frontal lobe venous anamoly with cavernoma. The neurologist thinks the brain lesions findings was just accidental and is not related to the OT plus.
So I am very thankful to find this website and read about others who it appears have been dealing with OT for many years. I am also thankful that this has not affected me until I am no longer working as I do not think I would have enough hours in the day to combat the OT plus and do the jobs I previously performed. Stay very fatigued most of the time. I do only one major task for a day--like one doctor visit or one grocery trip, etc. I have a strong faith which sustains me. I have wonderful husband, two beautiful adult daughters who are in health fields, and supportive friends.
I previously worked in my last career with SSA as a claims representative taking disability, retirement, and survivor claims and I do not recall ever taking a claim for disability from anyone with OT plus. However, I do remember one lady who filed with ET as one of her disabling conditions. Therefore, I was aware that OT is a rare motion disorder. I personally do not know or have never encountered anyone else with OT.
Thank you to Gloria and to the others who have shared on this forum. I am very new to this disorder so I have much to learn.
Hello from Southeast Alabama,
I am 57 years old, twice retired, and began having leg tremors July, 2012. Also have essential tremors less severe in hands mainly which must be inherited from my 81 year old mom. Initially, my internist primary doctor thought the leg problems were from my lumbar and ordered a lumbar MRI, referred me to my neurosurgeon. I was diagnosed with lumbar problems 2005-2006 but have never had any surgery, just epidurals and physical therapy, and have made many modifications in how I did things.
After I retired fully July, 2011, I sought answers for the severe headaches in back of head. MRI of cervical region showed herniated discs and neurosurgeon put me on neck traction three times daily which helped significantly. That was Dec 2011 - March 2012. So I was living life retired, traveling with my husband who also was retired when these leg tremors began in summer 2012, very gradually, but I started leaning on walls, counter tops, looking for walls to hold, avoiding shopping, curling my toes all the time to hang on, very unbalanced when standing, etc. When referred to my neurosurgeon Dec 2012, he observed me and told me I did not have a problem with my legs coming from my lumbar but a problem coming from my brain. He initially diagnosed ET and referred me to a neurologist. Neurologist observed me, diagnosed OT plus, but did order a brain MRI as I had a history of melanoma many years ago. He wanted me to start on Klonopin but I chose to try Neurontin since Klonopin was addictive. Had the brain MRI 01-02-13 and it revealed a venous anamoly with a cavernoma that had bled at some point located deep in the brain at corpus collusum.
Neurologist sent me back to my neurosurgeon who ordered a CTA and the CTA confirmed the neurosurgeon's diagnosis of a cavernoma in my brain. Neurologist had suspected an AVM on reviewing the brain MRI. The neurosurgeon will do another brain MRI in 6 weeks and says can't touch the cavernoma as too deep and the neurological deficits would be great, referred me back to neurologist who will work with me on the OT plus motion disorder. After taking the Neurontin for 4 weeks, neurologist is gradually switching me to the Klonopin which I agreed to try. The Neurontin had side effects which made it not possible for me to drive safely but it did help with the severity of the leg tremors and had a calming effect. However, even on Neurontin if I became stressed or anxious, the tremors increased. The neurosurgeon thinks there is a connection between my leg tremors and the left frontal lobe venous anamoly with cavernoma. The neurologist thinks the brain lesions findings was just accidental and is not related to the OT plus.
So I am very thankful to find this website and read about others who it appears have been dealing with OT for many years. I am also thankful that this has not affected me until I am no longer working as I do not think I would have enough hours in the day to combat the OT plus and do the jobs I previously performed. Stay very fatigued most of the time. I do only one major task for a day--like one doctor visit or one grocery trip, etc. I have a strong faith which sustains me. I have wonderful husband, two beautiful adult daughters who are in health fields, and supportive friends.
I previously worked in my last career with SSA as a claims representative taking disability, retirement, and survivor claims and I do not recall ever taking a claim for disability from anyone with OT plus. However, I do remember one lady who filed with ET as one of her disabling conditions. Therefore, I was aware that OT is a rare motion disorder. I personally do not know or have never encountered anyone else with OT.
Thank you to Gloria and to the others who have shared on this forum. I am very new to this disorder so I have much to learn.
Re: New to the forum? post a quick introduction
Hi! Rhonda:
Thank you so much for posting your history of OT and the trials of finding a correct diagnosis. You wrote a very comprehensive account as well which I wish everyone would do because it all adds to the information pool. As Dr. Russotto said at our meeting /study in Omaha we are all OT RESOURCES ! Clearly you are in the hands of neurologists that are defining your OT. Now that you retired I hope you will find a med that will help take the edge off your OT however there is nothing at this point in time that erases our symptoms completely. Yes, OT is tiring but I try to stay as mobile as possible and work around my OT and not let it control my life. Also try to be as open about your problem with those in your environment as possible, it makes life easier. Please keep everyone posted on the website as you travel this new road in life, we are here for you,
Gloria
Thank you so much for posting your history of OT and the trials of finding a correct diagnosis. You wrote a very comprehensive account as well which I wish everyone would do because it all adds to the information pool. As Dr. Russotto said at our meeting /study in Omaha we are all OT RESOURCES ! Clearly you are in the hands of neurologists that are defining your OT. Now that you retired I hope you will find a med that will help take the edge off your OT however there is nothing at this point in time that erases our symptoms completely. Yes, OT is tiring but I try to stay as mobile as possible and work around my OT and not let it control my life. Also try to be as open about your problem with those in your environment as possible, it makes life easier. Please keep everyone posted on the website as you travel this new road in life, we are here for you,
Gloria
Re: New to the forum? post a quick introduction
Hello Rhonda,
You have found a wonderful website and people who will be as helpful as possible to you.
Gloria is our "rock" and one of the most positive people you will ever meet; she keeps all of us "on track".
Your story is much the same as most of us; but you do have a few things others don't experience. I found it interesting your doctor said you had OT plus. I have never heard that before, did he/she give you any more information as to what the "plus" was? Was that because you have other things most of us don't have?
You did a wonderful job explaining everything; please do keep us informed and how you get along on Klonopin. I am on Klonopin, unable to tolerate Neurontin.
I do hope you are able to find someone in your area, or near you so you might meet another person with OT. It is an experience you would never forget. Just to be able to connect, personally, with someone else like you (and the rest of us) is awesome.
Betty
You have found a wonderful website and people who will be as helpful as possible to you.
Gloria is our "rock" and one of the most positive people you will ever meet; she keeps all of us "on track".
Your story is much the same as most of us; but you do have a few things others don't experience. I found it interesting your doctor said you had OT plus. I have never heard that before, did he/she give you any more information as to what the "plus" was? Was that because you have other things most of us don't have?
You did a wonderful job explaining everything; please do keep us informed and how you get along on Klonopin. I am on Klonopin, unable to tolerate Neurontin.
I do hope you are able to find someone in your area, or near you so you might meet another person with OT. It is an experience you would never forget. Just to be able to connect, personally, with someone else like you (and the rest of us) is awesome.
Betty