New to the forum? post a quick introduction
Moderator: gloria
Re: New to the forum? post a quick introduction
Hello, my name is Tammy. I am from Bristol Wisconsin. I was diagnosed with OT in 2013, but have had symptoms for about 8 years. I was diagnosed at Froedert Medical Center in Milwaukee Wisconsin. They have Movement Disorder Center. It took the doctor about 5 minutes to diagnose me by my shaky legs when standing. Glad to find a great forum to learn what others are doing.
Re: New to the forum? post a quick introduction
Hi Tammy - Glad to see another Wisconsinite here. You're only the third person I know with OT who lives in Wisconsin. I live in the Milwaukee area and go to Froedert also. Welcome!!
Re: New to the forum? post a quick introduction
Tammy: I'm so glad to have you as a new member of our Forum and what great news that you and Nin live within a close location and perhaps will arrange to meet. Meeting other OT people is a wonderful experience, it chases the feeling of loneliness away. This is one of the reasons we constantly wish when anyone REGISTERS they leave their location in their PROFILE. Tammy you did the right thing !! I know that you will find the website Forum to be a great group of very understanding friends and will look forward to your future postings. Gloria
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angela.hidalgo15
- Posts: 1
- Joined: Tue Dec 09, 2014 4:25 am
- Location: oregon
32 and just diagnosed... confused and scared
Hello,
My name is angela and I am new to this forum setting, but I found this group online and hoping maybe I can find out through others what I can expect and sone relations to my symptoms and illness. I'm scared and am not sure if this is something that someone my age typical gets, causes, and others symptoms, medications, and if I will ever get used to this. I was diagnosed with orthostatic tremors last month after being diagnosed for 4 months incorrectly. I'm just hoping that I will get better, it mostly effects my legs when I'm using my muscles, especially bending or going down stairs, and I get very short winded of breath. I'm on pain meds and colanzapm, but colanzapm not working....ugh...sorry so many questions.
My name is angela and I am new to this forum setting, but I found this group online and hoping maybe I can find out through others what I can expect and sone relations to my symptoms and illness. I'm scared and am not sure if this is something that someone my age typical gets, causes, and others symptoms, medications, and if I will ever get used to this. I was diagnosed with orthostatic tremors last month after being diagnosed for 4 months incorrectly. I'm just hoping that I will get better, it mostly effects my legs when I'm using my muscles, especially bending or going down stairs, and I get very short winded of breath. I'm on pain meds and colanzapm, but colanzapm not working....ugh...sorry so many questions.
Re: New to the forum? post a quick introduction
Hello to All, My name is Teree and I was just diagnosed with OT this week (still doing primary tests). My neurologist’s (never saw one before) knew instantly what was wrong and what I had because he has another patient with OT. I teared up when he put a name to it, after months of searching for an answer. I think I may have had OT (or something like it) for years but very mild, like always wanting to sit at every social function ex: parties, concerts etc. People look at you like you’re lazy or antisocial.
During the last 6-8 months it has rapidly gotten worse and I told my pulmonary specialists that if something wasn't done I would be in a wheel chair soon. Note: I must explain, I have another rare disorder, Pulmonary Eosinophilic Granuloma (I promise I am not a hypochondriac), diagnosed at NIH 30 years ago. And because like an idiot I smoked for several years, I now have COPD to go along with it. I always thought my breathing had something to do with my OT or maybe Restless Leg Syndrome, which I also have. Every doctor (nurses, ER doctors, physical therapists, GP) I saw I would ask about it and no one ever had a clue. My GP suggested a lumbar problem and did xrays but they came back normal.
My hands have shaken for years, when I was standing for a couple of minutes and friends have joked if I was having DTs haha! My GP prescribed low dose Propranolol for it 4 years ago and it did help till recently. To tell you the truth, when it wasn’t too bad I was afraid to seek help because I thought I may have something dreadful like Parkinson’s or such.
My neurologist has increased my Propranolol (after getting approval from my Pulmonologist) and I hope this will help without affecting my breathing. Dr. Tellez, Neurologist in Pinehurst, NC also gave me a handout explaining OT and suggested this site. He is currently trying to find out why mine has increased so much in the last few months when the disorder is supposed to increase gradually. I go for tests to see if I have an inner ear problem for dizziness. He said anything like dizziness or balance made OT worse.
I was at a graveside service 2 weeks ago and had to walk around in the back of the group (embarrassing and people look at you like you’re crazy). Most of the time I carry a little seat if we are going somewhere; after this summer going on a tour of the Confederate White House and my husband having to find and carry a metal chair around during most of the tour.
My story with OT has just begun and I am so happy to find y’all. It may take me a while, but I am reading ALL of it, what a wonderful source of information. Thank You!!
During the last 6-8 months it has rapidly gotten worse and I told my pulmonary specialists that if something wasn't done I would be in a wheel chair soon. Note: I must explain, I have another rare disorder, Pulmonary Eosinophilic Granuloma (I promise I am not a hypochondriac), diagnosed at NIH 30 years ago. And because like an idiot I smoked for several years, I now have COPD to go along with it. I always thought my breathing had something to do with my OT or maybe Restless Leg Syndrome, which I also have. Every doctor (nurses, ER doctors, physical therapists, GP) I saw I would ask about it and no one ever had a clue. My GP suggested a lumbar problem and did xrays but they came back normal.
My hands have shaken for years, when I was standing for a couple of minutes and friends have joked if I was having DTs haha! My GP prescribed low dose Propranolol for it 4 years ago and it did help till recently. To tell you the truth, when it wasn’t too bad I was afraid to seek help because I thought I may have something dreadful like Parkinson’s or such.
My neurologist has increased my Propranolol (after getting approval from my Pulmonologist) and I hope this will help without affecting my breathing. Dr. Tellez, Neurologist in Pinehurst, NC also gave me a handout explaining OT and suggested this site. He is currently trying to find out why mine has increased so much in the last few months when the disorder is supposed to increase gradually. I go for tests to see if I have an inner ear problem for dizziness. He said anything like dizziness or balance made OT worse.
I was at a graveside service 2 weeks ago and had to walk around in the back of the group (embarrassing and people look at you like you’re crazy). Most of the time I carry a little seat if we are going somewhere; after this summer going on a tour of the Confederate White House and my husband having to find and carry a metal chair around during most of the tour.
My story with OT has just begun and I am so happy to find y’all. It may take me a while, but I am reading ALL of it, what a wonderful source of information. Thank You!!
Re: New to the forum? post a quick introduction
Angela:
I can understand your "confusion and scared feelings", I believe all of us who first have the symptoms of OT
go through that point in time. But you found the right place where you now have a large group of OT people sharing their OT lives and coping skills. The more you learn the confusion and being scared will lessen. Going down stairs or inclines are part of the OT symptoms as well as getting short winded of breath. I know I must still remember to deep breath when challenged by a OT situation because I'm inclined to hold my breath not realizing I'm doing so. Look forward to your postings, Gloria
I can understand your "confusion and scared feelings", I believe all of us who first have the symptoms of OT
go through that point in time. But you found the right place where you now have a large group of OT people sharing their OT lives and coping skills. The more you learn the confusion and being scared will lessen. Going down stairs or inclines are part of the OT symptoms as well as getting short winded of breath. I know I must still remember to deep breath when challenged by a OT situation because I'm inclined to hold my breath not realizing I'm doing so. Look forward to your postings, Gloria
Re: New to the forum? post a quick introduction
Hi! Teree: Thank you for your informative introduction to your new group of fellow OT friends who are working together to fight back at the OT challenge that has invaded our lives. It is interesting that your feelings how you are being perceived publicly and socially is so very common with most of us. Using canes, walkers with seats etc. all help to show the public I have a problem ...... no questions asked and some will offer assistance. Please continue to share with us how you are traveling thru life with OT and ask questions of your new OT friends, All the best, Gloria
Re: New to the forum? post a quick introduction
OT RESEARCH NEWS 2015 - Congratulations!
A 1-year NORD grant of $30,000 for a clinical research study related to the diagnosis and/or treatment of Primary Orthostatic Tremor has been awarded!
The funding for this grant has come from donations by the Orthostatic Tremor community and a $10,000 grant from Lundbeck, a Danish pharmaceutical company. Lundeck created a special grant for the "Raise Your Hand" Rare Disease Day Fundraising campaign.
We are fortunate that this project was the recipient of the Lundbeck grant. The remaining balance of the OT fund can be applied to future research when the fund reaches its next goal.
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rTMS Therapy for Primary Orthostatic Tremor: A Novel Treatment Approach
A project to study the efficacy of repetitive transcranial magnetic stimulation therapy as a potential treatment for Primary Orthostatic Tremor patients
Primary Investigator: Aparna Wagle Shukla, MD
Institution: University of Florida
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For more information on donating to Orthostatic Tremor research click on the link below:
orthostatictremor.org/donate.html
Together we can stand up to OT!
Link to NORD Research Grant discussion on the forum - http://bit.ly/NORD_OT_Research2015
A 1-year NORD grant of $30,000 for a clinical research study related to the diagnosis and/or treatment of Primary Orthostatic Tremor has been awarded!
The funding for this grant has come from donations by the Orthostatic Tremor community and a $10,000 grant from Lundbeck, a Danish pharmaceutical company. Lundeck created a special grant for the "Raise Your Hand" Rare Disease Day Fundraising campaign.
We are fortunate that this project was the recipient of the Lundbeck grant. The remaining balance of the OT fund can be applied to future research when the fund reaches its next goal.
-----
rTMS Therapy for Primary Orthostatic Tremor: A Novel Treatment Approach
A project to study the efficacy of repetitive transcranial magnetic stimulation therapy as a potential treatment for Primary Orthostatic Tremor patients
Primary Investigator: Aparna Wagle Shukla, MD
Institution: University of Florida
------
For more information on donating to Orthostatic Tremor research click on the link below:
orthostatictremor.org/donate.html
Together we can stand up to OT!
Link to NORD Research Grant discussion on the forum - http://bit.ly/NORD_OT_Research2015
Re: New to the forum? post a quick introduction
Hi Everyone
Have had OT at least 15-20 years but only diagnosed about 5 years. Have been to 4 neurologists loads of different drugs,was with a neurologist Dr Nahab at University of Miami who was conducting a study for OTbut alas he left for UCLA San Diego and no word of his research. At this point ive given up doctors. Have started with a naturopath and so far nothing.
My life is very bland as I cannot go anywhere by myself. I dislike always depending on my husband or children. It
truly sucks. I know I should be grateful. I know there are far worse things that can go wrong in ones life. So I keep my mouth shut and try to be grateful for what I have.
Thanks for listening. Anyone have any hope?
Fondly Ellen 2
Have had OT at least 15-20 years but only diagnosed about 5 years. Have been to 4 neurologists loads of different drugs,was with a neurologist Dr Nahab at University of Miami who was conducting a study for OTbut alas he left for UCLA San Diego and no word of his research. At this point ive given up doctors. Have started with a naturopath and so far nothing.
My life is very bland as I cannot go anywhere by myself. I dislike always depending on my husband or children. It
truly sucks. I know I should be grateful. I know there are far worse things that can go wrong in ones life. So I keep my mouth shut and try to be grateful for what I have.
Thanks for listening. Anyone have any hope?
Fondly Ellen 2
Re: New to the forum? post a quick introduction
Hello Ellen: In answer to your question......... [Anyone have any hope?]....... Yes!!! Please look and read about the people who attended the meeting/research in Omaha, we all came away having hope! True maybe we might not have a cure but researchers are showing more interest and understanding about OT and that certainly brightens our future. In the meantime I look for new ways of coping to help maintain my independence. I still take Gabapentin to ease the symptoms of OT, and sit quicker to avoid the legs "event" . Like many I find my cane/chair is a great help when out alone. Gloria
Re: New to the forum? post a quick introduction
Hi Gloria ,My name is Anneliese and I did a lot of reading on this Web page before I finally joined this group.
Thank you for letting me know ,I am not the only one with this OT ,if this is what I truly have
I was complaining to my family Doctor of being unstable on my feet for about 3years,I called shaky, weakness on my lower body. I was send for cat scan, MRI and some Nerve test on my legs, all with no result.
I have all the symptoms described by members on this Forum, I must lean against something, or hold on to whoever is nearby when standing still, I have no problem on a Treadmill walking with a handle bar to hold on, or in the water at Aqua fit ,(but hard to take a shower after the pool without support)!
Two month ago I was send to a Neurologist (the second time)with again the same test like walking ,touching my nose and whatever! A visiting student Doctor was in the office and she did a few new things like a stainless steel item hitting the leg, and asking if I feel the vibrations? and how far down the leg? after that I was told I have OT, and given this information print out," All about OT, how to life with it".
I was also given a prescription for Clonazepam 0.5mg for 2 weeks and then 1mg, I did this for 2 month and found no difference in my slow walking or standing ,but I had muscle pain which I blamed on this new pill .
I read up more about the Clonazepam and decided to stop it, till I see the Neurologist again end of February. I could not sleep for 3 days after stopping, one good thing it let me sleep well. but I can't risk to impair my Brain
My main reason for it is to keep my brain as long as possible .My Husband is 82 and I am the Caregiver (Alzheimer)
I also have had a Hip replacement 15 years ago and should have the other done (Arthritis)
I know my future does not look rosy ,but I see I am not alone ! But I feel more tests should be done ,but we will see what my next appointment will say. Thank you Gloria
Thank you for letting me know ,I am not the only one with this OT ,if this is what I truly have
I was complaining to my family Doctor of being unstable on my feet for about 3years,I called shaky, weakness on my lower body. I was send for cat scan, MRI and some Nerve test on my legs, all with no result.
I have all the symptoms described by members on this Forum, I must lean against something, or hold on to whoever is nearby when standing still, I have no problem on a Treadmill walking with a handle bar to hold on, or in the water at Aqua fit ,(but hard to take a shower after the pool without support)!
Two month ago I was send to a Neurologist (the second time)with again the same test like walking ,touching my nose and whatever! A visiting student Doctor was in the office and she did a few new things like a stainless steel item hitting the leg, and asking if I feel the vibrations? and how far down the leg? after that I was told I have OT, and given this information print out," All about OT, how to life with it".
I was also given a prescription for Clonazepam 0.5mg for 2 weeks and then 1mg, I did this for 2 month and found no difference in my slow walking or standing ,but I had muscle pain which I blamed on this new pill .
I read up more about the Clonazepam and decided to stop it, till I see the Neurologist again end of February. I could not sleep for 3 days after stopping, one good thing it let me sleep well. but I can't risk to impair my Brain
My main reason for it is to keep my brain as long as possible .My Husband is 82 and I am the Caregiver (Alzheimer)
I also have had a Hip replacement 15 years ago and should have the other done (Arthritis)
I know my future does not look rosy ,but I see I am not alone ! But I feel more tests should be done ,but we will see what my next appointment will say. Thank you Gloria
Re: New to the forum? post a quick introduction
Hello Anneliese: Glad you have joined our OT Community and it sounds like you are having many of the symptoms of OT. I hope at your next appointment with a neurologist you will be given a EMG, that is a confirming test for OT. It is not uncommon to given Clonazepam as a med for OT, I remember that I was given it but did not respond well and I asked about Gabapentin and have been on it ever since. I have not heard of any medicine that makes our symptoms go away completely. You mentioned slow walking, a good steady walking pace has always been better for my leg muscles. You are not alone here so please stay in touch, Gloria
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plantation600
- Posts: 1
- Joined: Tue Feb 03, 2015 11:49 pm
- Location: Oldwick NJ
Re: New to the forum? post a quick introduction
Hello Everyone!
I am new to this post, my name is Mary White and I have had OT for about 8 years now. Basically I started to feel tremors in my legs about 8 years ago and the doctors said that I was having a panic attack. I believed that it was only a panic attack for a long time, because when I sat down, I calmed down and I didn't feel any shakiness in my legs. Also when I walked I felt ok. Then when I would go food shopping or go to the mall, it would start again and I just thought I was having a panic attack. I really though something was wrong with me and I was going crazy, because I would tell my doctor that my legs feel shaky only when I stand and its like he didn't believe me. And gave my Xanax for panic dis-order. I went to a neurologist and she did a bunch of test on me to see if I had MS, but all the test came back normally. I had read an article about POT and told my neurologist about it. She took her medical book off the shelve and looked it up and said " looks like that's what you have". I am on clonazepam, which does help me some. I try and live a normal life but standing really hurts my back and now I have chronic back pain.
I am so happy I found this sight, and I try and find the joy in each day.
Warmest Regards,
Mary
I am new to this post, my name is Mary White and I have had OT for about 8 years now. Basically I started to feel tremors in my legs about 8 years ago and the doctors said that I was having a panic attack. I believed that it was only a panic attack for a long time, because when I sat down, I calmed down and I didn't feel any shakiness in my legs. Also when I walked I felt ok. Then when I would go food shopping or go to the mall, it would start again and I just thought I was having a panic attack. I really though something was wrong with me and I was going crazy, because I would tell my doctor that my legs feel shaky only when I stand and its like he didn't believe me. And gave my Xanax for panic dis-order. I went to a neurologist and she did a bunch of test on me to see if I had MS, but all the test came back normally. I had read an article about POT and told my neurologist about it. She took her medical book off the shelve and looked it up and said " looks like that's what you have". I am on clonazepam, which does help me some. I try and live a normal life but standing really hurts my back and now I have chronic back pain.
I am so happy I found this sight, and I try and find the joy in each day.
Warmest Regards,
Mary
gloria wrote: Introductions and Greetings:
There have been quite a few new people registering and it might be nice to hear from you in terms of a quick introduction. It can be as much or as little information as you would like. And for the veterans of this site this may be a good time to re-introduce yourself.
best regards,
Gloria
Re: New to the forum? post a quick introduction
Hello Mary: Thank you for your introduction on the forum and history of living with OT. You now have a lot of friends sharing this diisorder and are very understanding. Also, I'm so happy to see that you live in New Jersey too. There are a few other OT people who live within reseasonable distance from me who I get together with and hope you will join us. I will let you know the next time we plan to meet. Certainly we must wait until this nasty Winter weather is finished. In the meantime will look forward to more of your posting . Gloria
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Cindy Nilsen
- Posts: 1
- Joined: Fri Feb 13, 2015 5:52 pm
- Location: Cornwall, UK
Re: New to the forum? post a quick introduction
Hi everyone, I have just been diagnosed with OT so am learning as I go along. My tremors started about 18 months ago, but as I also suffer from M.E/CFS I just put it down to another symptom of that. As it became worse I was referred to a neurologist, had nerve conduction tests aka torture! Also had an EMG done and was then referred to another neurologist at a different hospital for a second opinion as he is known to be an expert in this field. He confirmed OT. Because of the other health issues he is reluctant to use certain drugs as they will make my condition worse, so for now I will start off on Ritigotine patches. Looking forward to getting to know you all and learning more. Keep smiling! 