Hello Cazzie:
Extreme tragic events and stress in general have been reported as the onset of OT for some OT people. Stress in our lives can also exacerbate OT symptoms. You have also noted some of the classic symptoms of OT. However, you say " I have been to so many neurologists they just tell you to get on the net or give you a pill. " Although that answer might not be very compassionate on their part but unfortunately at this point in time the medications or treatments on the market give us very little help. We need more research desperately!!!!!!!! Best regards, Gloria
New to the forum? post a quick introduction
Moderator: gloria
Re: New to the forum? post a quick introduction
Hi, I'm Nelda. So relieved to have a diagnosis after 8 years. I asked my PCP for a referral to a neurologist if for no other reason than to rule out some things. I explained my symptoms and she knew right away what it was. Reading this web site assures me it's OT. I tell people I can walk for miles, but can't stand in place. They usually don't get it, or forget it quickly. I hate most the social aspect. When people stand around to talk I have to find a wall or a chair. I dread when it's announced, "Let's all stand and..." I'm trying to decide about taking a cane/stool with me. I have a 4 legged one that's sturdy, but that still puts me down low and odd. How do you handle the social aspect? I printed the business cards, but am hesitant to use them. I imagine people (other customers) rolling their eyes if I try to go to the front of the line. I do use a wheelchair at airports. This is such a strange and awkward illness.
Thanks for the developers of this web site. Gloria, I know you have worked hard at this and I can't tell you how much I appreciate it.
Thanks for the developers of this web site. Gloria, I know you have worked hard at this and I can't tell you how much I appreciate it.
Re: New to the forum? post a quick introduction
Nelda:
Thank you so much for posting , it is so helpful to read the continuing input from both new and old members. It is from this input that we and the medical profession learn a more comprehensive meaning of our life with OT. However trying to deliver the message about OT to the minds of the public is very difficult. When I go out for the day I take with me my cane/chair or walker with a seat etc. this way people know I have a problem, do not ask questions and sometimes ask if they can help. On the other hand everyone that has OT should also help get the word out to the public about our cause thru whatever medias they have available , place of worship, clubs, workplace , newspapers etc. any means that will help extend recognition as a neurological movement disorder.
To all, keep your postings coming, it is our way of connecting with our OT friends, Gloria
Thank you so much for posting , it is so helpful to read the continuing input from both new and old members. It is from this input that we and the medical profession learn a more comprehensive meaning of our life with OT. However trying to deliver the message about OT to the minds of the public is very difficult. When I go out for the day I take with me my cane/chair or walker with a seat etc. this way people know I have a problem, do not ask questions and sometimes ask if they can help. On the other hand everyone that has OT should also help get the word out to the public about our cause thru whatever medias they have available , place of worship, clubs, workplace , newspapers etc. any means that will help extend recognition as a neurological movement disorder.
To all, keep your postings coming, it is our way of connecting with our OT friends, Gloria
Re: New to the forum? post a quick introduction
Hello Everyone
I am not exactly new to the forum as I posted a couple of notes over two years ago when I was just introduced to Lyrica and was overjoyed to find something that could control my tremors. Well, there has been a bit of water under the bridge since then. I had a massive heart attack last August and went into cardiac arrest during surgery (the best place to do it IF YOU MUST!) I would be interested to hear from anyone who has "multiple morbidities" as my neurologist says. As far as I can work it out, I have Peripheral Neuropathy, Orthostatic Tremor and Ischeamic Heart Disease. I haven't been able to find a specialist who understands the interaction of these three syndromes. For instance, if I ask my cardiologist if my neuropathy could have caused my heart attack, he says "That's not my field".
For the record, I was diagnosed in June 2009 although my doctor believed I had had symptoms for ten years or so from what I told him. Was prescribed Lyrica and participated in a research project at the Queensland University ofTechnology where my tremors were recorded and filmed. Since then I have had ups and downs, complicated by my other problems, but I would say that, on the whole, my OT is getting worse and I am not sure whether it is because the effects of Lyrica are starting to wane. However, I am plodding along with the aid of a walking stick which I use to fend off wayward shoppers when I venture out to Toowoomba.
Look forward to hearing from you.
Cheers
Val
I am not exactly new to the forum as I posted a couple of notes over two years ago when I was just introduced to Lyrica and was overjoyed to find something that could control my tremors. Well, there has been a bit of water under the bridge since then. I had a massive heart attack last August and went into cardiac arrest during surgery (the best place to do it IF YOU MUST!) I would be interested to hear from anyone who has "multiple morbidities" as my neurologist says. As far as I can work it out, I have Peripheral Neuropathy, Orthostatic Tremor and Ischeamic Heart Disease. I haven't been able to find a specialist who understands the interaction of these three syndromes. For instance, if I ask my cardiologist if my neuropathy could have caused my heart attack, he says "That's not my field".
For the record, I was diagnosed in June 2009 although my doctor believed I had had symptoms for ten years or so from what I told him. Was prescribed Lyrica and participated in a research project at the Queensland University ofTechnology where my tremors were recorded and filmed. Since then I have had ups and downs, complicated by my other problems, but I would say that, on the whole, my OT is getting worse and I am not sure whether it is because the effects of Lyrica are starting to wane. However, I am plodding along with the aid of a walking stick which I use to fend off wayward shoppers when I venture out to Toowoomba.
Look forward to hearing from you.
Cheers
Val
Re: New to the forum? post a quick introduction
Hello Val:
Welcome to the ” Age of the Specialist” but I understand the system can bring more concentrated care and treatments but there needs to be a connecting directory coming forth for all the human parts of our bodies.
Sorry that you have been dealing with multiple problems that certainly makes your OT symptoms more difficult. To answer your question you are not alone. I have been reading for years the input from our OT friends and many have other health problems including myself. Osteoarthritis and stenosis of the spine plus trying to be a breast cancer survivor in an aging body are my problems . My goal in life is to remain as mobile as possible like you with your walking sticks and me with my cane chair.
PS : Have you read on the Forum about the OT meeting in Sydney, Australia in June and are planning to go? Being with other OT is an amazing experience.
All the best, Gloria
Welcome to the ” Age of the Specialist” but I understand the system can bring more concentrated care and treatments but there needs to be a connecting directory coming forth for all the human parts of our bodies.
Sorry that you have been dealing with multiple problems that certainly makes your OT symptoms more difficult. To answer your question you are not alone. I have been reading for years the input from our OT friends and many have other health problems including myself. Osteoarthritis and stenosis of the spine plus trying to be a breast cancer survivor in an aging body are my problems . My goal in life is to remain as mobile as possible like you with your walking sticks and me with my cane chair.
PS : Have you read on the Forum about the OT meeting in Sydney, Australia in June and are planning to go? Being with other OT is an amazing experience.
All the best, Gloria
Re: New to the forum? post a quick introduction
Hi Gloria,
Thanks for the welcome. I am following the posts regarding the Forum in Sydney. I would dearly love to go but am pretty sure I will have to be content with reading about it. I believe my neurologist, Dr John O'Sullivan, who specialises in movement disorders, will be there for the Conference of Neurologists and will most likely attend the meeting. What a great feat for Australia to have this forum here! We will all learn so much from it
Cheers
Val
Thanks for the welcome. I am following the posts regarding the Forum in Sydney. I would dearly love to go but am pretty sure I will have to be content with reading about it. I believe my neurologist, Dr John O'Sullivan, who specialises in movement disorders, will be there for the Conference of Neurologists and will most likely attend the meeting. What a great feat for Australia to have this forum here! We will all learn so much from it
Cheers
Val
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James1josh
- Posts: 1
- Joined: Sat Apr 06, 2013 10:15 pm
Re: New to the forum? post a quick introduction
Hi,
My name is Kathy and I was diagnosed with OT in July 2012. I find Mysoline is helpful to some extent in helping reduce my tremor but have recently had some side effects, not sure if this is stress related with work or the medication or maybe both. I tried to go off it but the tremor was too bad and I went back on it. I noticed a lot of people mentioned Gabapentin is helpful and am looking at other alternatives. Social events involving standing are really difficult but want to try and stay positive and keep trying - a beta blocker helps. Difficult to explain to people that walking is fine but standing still is not. Great to hear about the forum in Sydney in June and interested in attending.
Cheers,
Kathy
My name is Kathy and I was diagnosed with OT in July 2012. I find Mysoline is helpful to some extent in helping reduce my tremor but have recently had some side effects, not sure if this is stress related with work or the medication or maybe both. I tried to go off it but the tremor was too bad and I went back on it. I noticed a lot of people mentioned Gabapentin is helpful and am looking at other alternatives. Social events involving standing are really difficult but want to try and stay positive and keep trying - a beta blocker helps. Difficult to explain to people that walking is fine but standing still is not. Great to hear about the forum in Sydney in June and interested in attending.
Cheers,
Kathy
Re: New to the forum? post a quick introduction
Hello all you fellow OTs out there,
It has taken me a few weeks to get up the nerve to write! Also, I had trouble navigating this and could not figure it out.
Okay, about 2 months ago I got on the computer and typed in "shaky legs". Reason for doing this was that I knew I did not have "weak legs", since I go for daily walks, about 1-2 miles. Two years ago I had a knee replacement, which has gone very well, no problems! Anyway, I found the symptoms that I had, including an article from the Mayo Clinic.
I already had a Dr. appointment for a blood test, so I mentioned this problem to him and gave him the
Mayo article. He gave me a very tiny prescription for Clonazepam once a day. It has done nothing for the standing. However, I do not feel quite as anxious as during the winter months, with snow and ice, etc. on the deck and in the yard. I tend to feel that I am going to fall to the left side all the time.
Looking back, I now realize that as long ago as 15 years, I had trouble standing to some degree.
But, now it is much worse.
I do have a question: Is this condition more prevalent among women than men? I have no clue, but perhaps someone knows. I am not sure if I should go see a neurologist or not. But, at least I figured this out on my own without going to numerous doctors, at least, so far!!
It has taken me a few weeks to get up the nerve to write! Also, I had trouble navigating this and could not figure it out.
Okay, about 2 months ago I got on the computer and typed in "shaky legs". Reason for doing this was that I knew I did not have "weak legs", since I go for daily walks, about 1-2 miles. Two years ago I had a knee replacement, which has gone very well, no problems! Anyway, I found the symptoms that I had, including an article from the Mayo Clinic.
I already had a Dr. appointment for a blood test, so I mentioned this problem to him and gave him the
Mayo article. He gave me a very tiny prescription for Clonazepam once a day. It has done nothing for the standing. However, I do not feel quite as anxious as during the winter months, with snow and ice, etc. on the deck and in the yard. I tend to feel that I am going to fall to the left side all the time.
Looking back, I now realize that as long ago as 15 years, I had trouble standing to some degree.
But, now it is much worse.
I do have a question: Is this condition more prevalent among women than men? I have no clue, but perhaps someone knows. I am not sure if I should go see a neurologist or not. But, at least I figured this out on my own without going to numerous doctors, at least, so far!!
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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 Lia:
A survey on this web site show OT affects women to men in a 2 to 1 ratio. Not a true test as women have a longer life span and OT usually does not show up until later in life but a good number to use.
If you have the means I suggest that you go to a top notch movement disorder clinic or hospital.
Most Neurologists will just look in their book at what to prescribe. ( What has been prescribed for others and what is safe for you).
Going to a neurologist will not provide you with much more information than you have now.
Best regards to you. I have had OT for a number of years.OT is a big pain, but, it could be much worse.
A survey on this web site show OT affects women to men in a 2 to 1 ratio. Not a true test as women have a longer life span and OT usually does not show up until later in life but a good number to use.
If you have the means I suggest that you go to a top notch movement disorder clinic or hospital.
Most Neurologists will just look in their book at what to prescribe. ( What has been prescribed for others and what is safe for you).
Going to a neurologist will not provide you with much more information than you have now.
Best regards to you. I have had OT for a number of years.OT is a big pain, but, it could be much worse.
Re: New to the forum? post a quick introduction
Thanks so much, Dwight!
This would not be something I would have thought of myself and may save me time and anxiety
and money! I shall see what is available, hopefully in this area.
Lia
This would not be something I would have thought of myself and may save me time and anxiety
and money! I shall see what is available, hopefully in this area.
Lia
Re: Possible cause of my OT
Hi Everyone!
Not sure if this will get posted as I am still having a heck of a time navigating this site!
Anyway, I read somewhere, perhaps here, that anxiety is not the cause of OT, but it can make it worse. Well, that being the case, then I see no reason that it cannot be the CAUSE also.
Here is my situation: Noticed it at least 15+ yrs ago to a certain extent. I had two children, the
oldest of whom died at age 30 after 3 yrs of illness. That was in 1994. Then 6 yrs later, my other child died after being ill about 1 1/2 yrs. This was in 2000. I tend to keep things in, at least in front of other folks and believe I have done quite well. Have a good life and plenty of social contacts, etc.
SO, JUST SOMETHING TO CONSIDER FOR OTHERS WHO HAVE HAD MAJOR STRESS!
Hope to hear from someone regarding this.
Lia
Not sure if this will get posted as I am still having a heck of a time navigating this site!
Anyway, I read somewhere, perhaps here, that anxiety is not the cause of OT, but it can make it worse. Well, that being the case, then I see no reason that it cannot be the CAUSE also.
Here is my situation: Noticed it at least 15+ yrs ago to a certain extent. I had two children, the
oldest of whom died at age 30 after 3 yrs of illness. That was in 1994. Then 6 yrs later, my other child died after being ill about 1 1/2 yrs. This was in 2000. I tend to keep things in, at least in front of other folks and believe I have done quite well. Have a good life and plenty of social contacts, etc.
SO, JUST SOMETHING TO CONSIDER FOR OTHERS WHO HAVE HAD MAJOR STRESS!
Hope to hear from someone regarding this.
Lia
Re: New to the forum? post a quick introduction
Hello, My name is Phyllis Betti, I live in the San Francisco Bay Area. While reading Nelda's post it reminded me of being at a funeral for a friend's father. It was a mass. Well you are asked to stand quite often over the course of the mass. I was so embarassed that I could not stand as everyone else was. People looked at me like 'what is your problem'. I broke out in a sweat and then the shakyness started to include my whole body. I just wanted to get out of there. That's been years ago and I keep remembering other times where the standing still was just impossible for me. I am so thankful that my Neurologist diagnosed me with OT just last Friday. It was my 1st time seeing a Neurologist. Relief to know I had a real disease. Now to deal with it. Clonazepam seems to be helping me somewhat. I too believe stress makes it all worse. (thanks for letting me put down my 2 cents). Phyl
Re: New to the forum? post a quick introduction
Hi! Lia & Phyl : True, OT is stressful and a challenge but as time goes by we seem to gain inner strength and learn skills to work around our disability and do not let it control our lives. Remember you have the OT community as a source of understanding and support as well ! My best, Gloria
Re: New to the forum? post a quick introduction
Hi Lia and Phyl..........Lia I do believe you should have a EMG test just to confirm you have OT !
though the neurologist cant help much ,following that result .
Phyl expresses the relief when she got the diagnoses proper just last Friday .....how I related to Phyl at the funeral , think that was the last straw for me , couldn't stand holding a cup at my `best friends Mums farewell`,that made me go back to my GP `again` and insist on further medical investigation, what followed was amazing relief having name for `it` ....and loads of anxiety just dropped away because I could stop covering up my problem ....I had a reason for my wobbles !
Lia....also like you, believe stress is a biggy and on reflection looking back played a part in my OT...since diagnose,so much better, because I do my utmost to avoid anxiety and stress , along with crowds and slow moving people
thanks ....Didi NZ
though the neurologist cant help much ,following that result .
Phyl expresses the relief when she got the diagnoses proper just last Friday .....how I related to Phyl at the funeral , think that was the last straw for me , couldn't stand holding a cup at my `best friends Mums farewell`,that made me go back to my GP `again` and insist on further medical investigation, what followed was amazing relief having name for `it` ....and loads of anxiety just dropped away because I could stop covering up my problem ....I had a reason for my wobbles !
Lia....also like you, believe stress is a biggy and on reflection looking back played a part in my OT...since diagnose,so much better, because I do my utmost to avoid anxiety and stress , along with crowds and slow moving people
thanks ....Didi NZ
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owen-lynettepickles
- Posts: 54
- Joined: Sat Jun 06, 2009 4:26 am
- Location: Blenheim, New Zealand
Re: New to the forum? post a quick introduction
Hello all
Gloria is right - once we have a diagnosis, we quickly learn ways to keep stress out of our lives. I have certainly gained a lot of inner strength that I did not know I had to get on with life and not let OT take over, even to the point I can go out now and not get in a panic that I will struggle to stand when put in a crowded situation. I guess we learn to suss out an area quickly and know where the escape routes are!! I've been looking after our grandchildren - several days on, then a couple of days off - over the last fortnight while their parents had a holiday and the OT has come to the fore again. Put it all down to the stress and tiredness of looking after youngsters. Has been a learning experience and made me realise that I'm not super woman. Will be telling my daughter I won't be doing it again to the same extent - one night is OK - as I need to be thinking about myself. Have 24 hours ago until they are home again, then I will be taking it easy for the next week so that I can get on an even keel again.
Regards
Lynette
Gloria is right - once we have a diagnosis, we quickly learn ways to keep stress out of our lives. I have certainly gained a lot of inner strength that I did not know I had to get on with life and not let OT take over, even to the point I can go out now and not get in a panic that I will struggle to stand when put in a crowded situation. I guess we learn to suss out an area quickly and know where the escape routes are!! I've been looking after our grandchildren - several days on, then a couple of days off - over the last fortnight while their parents had a holiday and the OT has come to the fore again. Put it all down to the stress and tiredness of looking after youngsters. Has been a learning experience and made me realise that I'm not super woman. Will be telling my daughter I won't be doing it again to the same extent - one night is OK - as I need to be thinking about myself. Have 24 hours ago until they are home again, then I will be taking it easy for the next week so that I can get on an even keel again.
Regards
Lynette