I think down the line I may try acupuncture - going to let it sink in for a few weeks and looks like I'll just have to keep on leaning
New to the forum? post a quick introduction
Moderator: gloria
Re: New to the forum? post a quick introduction
Thank you Anne & Betty for your kind words - I will certainly direct the neurologist to this website. As it is just today that I have been diagnosed I am feeling a bit strange - chiefly because I have been very lucky with my health and rarely go to the doctors so it feels wierd that i have something that isn't going to go away. The other thing is a sense of relief that a) I didn't have to go through what many of you all seemed to have with a diagnosis problem and b) all things being equal I have every possiblity of remaining able to walk.
I think down the line I may try acupuncture - going to let it sink in for a few weeks and looks like I'll just have to keep on leaning
I think down the line I may try acupuncture - going to let it sink in for a few weeks and looks like I'll just have to keep on leaning
Re: New to the forum? post a quick introduction
Hello again Sheila,
As I said, you will find lots of friends on this site and eager to help.
Like you, I have always been VERY healthy, always on the go, very active and doing anything and everything I wanted. As time has passed, I am less able to do what I did before OT; but that is not to say you won't continue to be able to do all the things you are doing now.
There are so many on this site who live their lives as they always have; so continue to have positive thoughts and may you be one who does the same.
Please keep us posted and good luck,
Betty
As I said, you will find lots of friends on this site and eager to help.
Like you, I have always been VERY healthy, always on the go, very active and doing anything and everything I wanted. As time has passed, I am less able to do what I did before OT; but that is not to say you won't continue to be able to do all the things you are doing now.
There are so many on this site who live their lives as they always have; so continue to have positive thoughts and may you be one who does the same.
Please keep us posted and good luck,
Betty
Re: New to the forum? post a quick introduction
Hello Sheila: Thank you for posting your experience with your GP, he really owes you an apology for laughing, for one thing is true he would not be laughing if he were the patient in this case. Happy it did not take you very long to get the correct diagnosis. Also, I’m pleased that you mentioned “seemed to come after a virus a couple of Christmases ago.” This is very important because I’m trying to find the common factor that causes this disease and I wish everyone would report if they are suspicious of something that is in their history that might be the cause. So far, viral or even latent viral might be the link, I mentioned this to a neurologist and got the answer that could be a good possibility. I know that I almost died from a very bad case of influenza as a very young child. However did not have the OTsymptoms until my early "50"s , maybe a latent virus. Anyway, welcome abroad, Gloria
Re: New to the forum? post a quick introduction
Hi to all
Gloria mentioned on one of the posts on this forum that she was attempting to find a common thread in the cause of OT and asked for peoples suspicions of the cause of their OT. I am convinced that the onset of my OT coincided with a bad fracture of my ankle in Christmas 2007. In the course of my recovery I developed RSD (Reflex Sympathetic Dystrophy) - it cleared up after some time but then came the OT.When I mentioned this to one of the leading specialists in Movement Disorder here in Ireland he thought there MIGHT be a connection as RSD is also a neurological condition of which little is known like OT. All I know is that prior to fracturing my ankle I was perfect and 6 months later I could not stand in the shower.
I have tried all the usual medications and am currently trying Lyrica and would be interested to hear from anyone who is on it what dose did they have to go on before it helped - I am currently on 300mg a day but cannot say that it is really helping - also wonder if anyone took some other medication at some time as Lyrica with any success?
Best wishes to all and a Happy Easter
Catherine
Gloria mentioned on one of the posts on this forum that she was attempting to find a common thread in the cause of OT and asked for peoples suspicions of the cause of their OT. I am convinced that the onset of my OT coincided with a bad fracture of my ankle in Christmas 2007. In the course of my recovery I developed RSD (Reflex Sympathetic Dystrophy) - it cleared up after some time but then came the OT.When I mentioned this to one of the leading specialists in Movement Disorder here in Ireland he thought there MIGHT be a connection as RSD is also a neurological condition of which little is known like OT. All I know is that prior to fracturing my ankle I was perfect and 6 months later I could not stand in the shower.
I have tried all the usual medications and am currently trying Lyrica and would be interested to hear from anyone who is on it what dose did they have to go on before it helped - I am currently on 300mg a day but cannot say that it is really helping - also wonder if anyone took some other medication at some time as Lyrica with any success?
Best wishes to all and a Happy Easter
Catherine
Re: New to the forum? post a quick introduction
Catherine:
In your post you mentioned that you were currently on Lyrica and “ would be interested to hear from anyone who is on it, what dose did they have to go on before it helped “. For more information about experiences on the forum with Lyrica go to the top right corner of the page to Search and type in Lyrica and you will get 67 matches covering 5 pages. This will give you a broad view of the experiences OT people have had with Lyrica. Hope this will help. Gloria
In your post you mentioned that you were currently on Lyrica and “ would be interested to hear from anyone who is on it, what dose did they have to go on before it helped “. For more information about experiences on the forum with Lyrica go to the top right corner of the page to Search and type in Lyrica and you will get 67 matches covering 5 pages. This will give you a broad view of the experiences OT people have had with Lyrica. Hope this will help. Gloria
Re: New to the forum? post a quick introduction
Thanks Gloria and thank you for this forum and all your hard work
Cathrine
Cathrine
Re: New to the forum? post a quick introduction
Cathrine: When it comes to thanks we who have OT are lucky I have a son Jeff (admin) who had the foresight and internet expertise to suggest that I have a website to tell my OT experience. Gloria
Re: New to the forum? post a quick introduction
Catherine, I must agree with Gloria.
She was encouraged by her son, Jeff, to put her story on the web, and as they say, "the rest is History".
I have had the pleasure of meeting Gloria, her son Jeff and his wife; they are all wonderful people and Jeff is excellent with this website. We can't thank them enough.
Betty
She was encouraged by her son, Jeff, to put her story on the web, and as they say, "the rest is History".
I have had the pleasure of meeting Gloria, her son Jeff and his wife; they are all wonderful people and Jeff is excellent with this website. We can't thank them enough.
Betty
Re: New to the forum? post a quick introduction
Hi - my name is Carolyne and I live in Phoenix, AZ. Have had the tremors for a few years and now am heading to my 4th doctor in July with no answers so far - look at you like you have 3 eyes.
Thank goodness I came across your web site to finally get answers.
I curl my toes to steady myself if I have to stand, especially while putting. The top of me feet hurt and hard to stand on them first thing in the morning. Any solutions?
Carolyne
Thank goodness I came across your web site to finally get answers.
I curl my toes to steady myself if I have to stand, especially while putting. The top of me feet hurt and hard to stand on them first thing in the morning. Any solutions?
Carolyne
Re: New to the forum? post a quick introduction
Welcome Carolyne,
I understand your feeling after having seen three doctors and not getting answers. Just don't give up; you will find a doctor who has some understanding of OT, and will get your answers. Did you ask the doctor you are to see in July if he/she has ever seen anyone with OT? That might be something you want to ask.
You have found this wonderful site and will find many friends who will try to help with questions you may have.
You sound like you are a golfer; I used to play too, and loved it. As you said, it is difficult to stand still while trying to putt, and we have a tendancy to "grip" the ground with our toes. This does cause cramping in the feet, and legs ~ at least for me. You may hear from another lady on this site who is an avid golfer also. She may have more advice for you than I since I am no longer able to play.
As for a solution to the problem you have first thing in the morning; I don't have an answer other than to sit on the side of the bed with your feet on the floor, before standing, and put a little pressure on your feet. That may help.
We seem to constantly be trying to find different ways of coping, and you will find yours.
If you are near the Mayo Clinic in AZ, you might try going there for a diagnosis.
Stay in touch and let us know how you are doing.
Betty
I understand your feeling after having seen three doctors and not getting answers. Just don't give up; you will find a doctor who has some understanding of OT, and will get your answers. Did you ask the doctor you are to see in July if he/she has ever seen anyone with OT? That might be something you want to ask.
You have found this wonderful site and will find many friends who will try to help with questions you may have.
You sound like you are a golfer; I used to play too, and loved it. As you said, it is difficult to stand still while trying to putt, and we have a tendancy to "grip" the ground with our toes. This does cause cramping in the feet, and legs ~ at least for me. You may hear from another lady on this site who is an avid golfer also. She may have more advice for you than I since I am no longer able to play.
As for a solution to the problem you have first thing in the morning; I don't have an answer other than to sit on the side of the bed with your feet on the floor, before standing, and put a little pressure on your feet. That may help.
We seem to constantly be trying to find different ways of coping, and you will find yours.
If you are near the Mayo Clinic in AZ, you might try going there for a diagnosis.
Stay in touch and let us know how you are doing.
Betty
Re: New to the forum? post a quick introduction
Hi! Carolyne:
Welcome to the website and thank you for registering. I hope the new doctor that you are going to see is a neurologist who has experience in Neurological Movement Disorders, if not Betty is right going to the Mayo Clinic in AZ is a good idea. If you get a confirming diagnosis of OT please let us know if you have any idea about what might have caused the onset of your symptoms, this is important. Participation on the website is good for all and the information we share helps the medical community to understand our life with OT. You now have a new group of friends who really understand what it is like to live with OT. Please stay PROACTIVE and POSITIVE in spirit.
Your OT Partner, Gloria, New Jersey, USA
Welcome to the website and thank you for registering. I hope the new doctor that you are going to see is a neurologist who has experience in Neurological Movement Disorders, if not Betty is right going to the Mayo Clinic in AZ is a good idea. If you get a confirming diagnosis of OT please let us know if you have any idea about what might have caused the onset of your symptoms, this is important. Participation on the website is good for all and the information we share helps the medical community to understand our life with OT. You now have a new group of friends who really understand what it is like to live with OT. Please stay PROACTIVE and POSITIVE in spirit.
Your OT Partner, Gloria, New Jersey, USA
Re: New to the forum? post a quick introduction
Hi, my name is Laura. I was so thrilled to find this site yesterday. It has been a great boost for my feelings of inadequacy and embarrassment to read everyone else's stories of OT and know that I am not alone. I have had OT for about 8 1/2 years now and was diagnosed about 7 1/2 years ago, fairly quickly. They did an MRI to rule out MS, brain tumor, Parkinsons, etc. and luckily the first neurologist I went to had another patient with OT and recognized the symptoms right away.
I take Clonazepam, 1.5 mg before bed and .5 mg each morning. I also take Propranolol 80 ER mg each morning. It does make me feel tired, but after taking for so many years, I've gotten used to it. My neurologist has also suggested Xanax if I am planning to go to a party or out shopping for a period of time and I am nervous about standing. I don't know that the Xanax really helps with the tremors, but it does make me feel a little calmer, which is a good thing. I tried Primidone, which really seemed to help right away, but the side effects for me were severe, so I had to stop. My doctor even told me to try drinking a little alcohol, as that will help reduce the tremors. It works; however, it only works while drinking and the more you drink the more you need. The next day I am much worse off. Can barely stand 5 seconds without trembling.
I have the same symptoms you all have discussed, the tightening of my legs and curling of my toes when I start to tremble. Didn't realize that was "normal". If I stand in that position for too long I get lower back pain and start to feel light headed. My doctor said the light headedness was due to my blood pressure dropping, partly from the disease and partly from the Propranolol I take. Obviously the more anxious I get the more I tremble and the more I tremble the more anxious I get....continuous cycle. I'm prone to mini panic attacks in stores if I have to stand for long. I hate social situations where I am expected to mingle and find myself searching for a chair or a wall to lean on. Makes me feel so unsociable. Hard to mingle in the shops with my girl friends when all I want to do is run outside and sit on the curb before I crash into a display stand and start breaking things. My morning walks around the neighborhood can be a chore if I run into a neighbor who wants to chat. I can last sometimes 10-15 minutes, which is a miracle most days, but by then my back is killing me, I'm shaking all over and it takes everything I have to take that first step. Even my friends and family who know I have OT don't really understand it. I don't know that my husband even truly understands what we go through. That's why finding this website is so refreshing.
Thank you to everyone who has shared their stories and trials and successes. I look forward to visiting this site often. Finally feel like I found some friends who understand.
I take Clonazepam, 1.5 mg before bed and .5 mg each morning. I also take Propranolol 80 ER mg each morning. It does make me feel tired, but after taking for so many years, I've gotten used to it. My neurologist has also suggested Xanax if I am planning to go to a party or out shopping for a period of time and I am nervous about standing. I don't know that the Xanax really helps with the tremors, but it does make me feel a little calmer, which is a good thing. I tried Primidone, which really seemed to help right away, but the side effects for me were severe, so I had to stop. My doctor even told me to try drinking a little alcohol, as that will help reduce the tremors. It works; however, it only works while drinking and the more you drink the more you need. The next day I am much worse off. Can barely stand 5 seconds without trembling.
I have the same symptoms you all have discussed, the tightening of my legs and curling of my toes when I start to tremble. Didn't realize that was "normal". If I stand in that position for too long I get lower back pain and start to feel light headed. My doctor said the light headedness was due to my blood pressure dropping, partly from the disease and partly from the Propranolol I take. Obviously the more anxious I get the more I tremble and the more I tremble the more anxious I get....continuous cycle. I'm prone to mini panic attacks in stores if I have to stand for long. I hate social situations where I am expected to mingle and find myself searching for a chair or a wall to lean on. Makes me feel so unsociable. Hard to mingle in the shops with my girl friends when all I want to do is run outside and sit on the curb before I crash into a display stand and start breaking things. My morning walks around the neighborhood can be a chore if I run into a neighbor who wants to chat. I can last sometimes 10-15 minutes, which is a miracle most days, but by then my back is killing me, I'm shaking all over and it takes everything I have to take that first step. Even my friends and family who know I have OT don't really understand it. I don't know that my husband even truly understands what we go through. That's why finding this website is so refreshing.
Thank you to everyone who has shared their stories and trials and successes. I look forward to visiting this site often. Finally feel like I found some friends who understand.
Re: New to the forum? post a quick introduction
Welcome to the forum Laura.
You have found the most informative site on OT you will ever see. You will find lots of friends here who will be most helpful. As you have seen, most of us share the same symptoms as you described, so we understand exactly what you are saying. It is hard for someone who doesn't have OT to truly understand what we go through each time we try to stand, walk, socialize, etc, no matter how hard they try.
I also have problems going to social functions and trying to stand and talk ~ next to impossible, and it causes my back to ache as well. I think because my core isn't as strong as it should be, it's hard to stand.
I think we can all relate to having stood, or leaned for too long and then try to take that first step is horrific. But....we all continue to try and learn new ways of coping with our problem. The best thing for me is to SIT...so I do.
I hope you will visit this site often, you will find lots of support here.
Good luck and stay positive!
Betty
You have found the most informative site on OT you will ever see. You will find lots of friends here who will be most helpful. As you have seen, most of us share the same symptoms as you described, so we understand exactly what you are saying. It is hard for someone who doesn't have OT to truly understand what we go through each time we try to stand, walk, socialize, etc, no matter how hard they try.
I also have problems going to social functions and trying to stand and talk ~ next to impossible, and it causes my back to ache as well. I think because my core isn't as strong as it should be, it's hard to stand.
I think we can all relate to having stood, or leaned for too long and then try to take that first step is horrific. But....we all continue to try and learn new ways of coping with our problem. The best thing for me is to SIT...so I do.
I hope you will visit this site often, you will find lots of support here.
Good luck and stay positive!
Betty
Re: New to the forum? post a quick introduction
Laura:
Thank you for posting your story of where you are in time with OT. One thing that I always advise is for OT people to urge all their family and friends to read the website too so they will better understand this disabling cycle that we experience all through our days. We learn coping skills that help us get through the day but getting people to UNDERSTAND is a big challenge!
It is hard for us to understand too, one minute we feel normal legs, the next they are not receiving the right functioning messages in our muscles causing them to contract totally disabled. You will find aids that most us use when we leave our homes for the social world such as cane chairs, walkers with a seat, wheel chairs etc. From those we choose the one to service us the best that day, put it in the car and off we go. Doing this relieves us of some of the panic of looking for a place to sit plus you do not have to explain as much because people just see you have some kind of problem. Also you will be surprised how many people will offer you help such as opening doors, helping you put packages in the car etc.
Most importantly you know you are not alone, a feeling we all need.
As Betty said stay positive ! My best regards, Gloria
Thank you for posting your story of where you are in time with OT. One thing that I always advise is for OT people to urge all their family and friends to read the website too so they will better understand this disabling cycle that we experience all through our days. We learn coping skills that help us get through the day but getting people to UNDERSTAND is a big challenge!
It is hard for us to understand too, one minute we feel normal legs, the next they are not receiving the right functioning messages in our muscles causing them to contract totally disabled. You will find aids that most us use when we leave our homes for the social world such as cane chairs, walkers with a seat, wheel chairs etc. From those we choose the one to service us the best that day, put it in the car and off we go. Doing this relieves us of some of the panic of looking for a place to sit plus you do not have to explain as much because people just see you have some kind of problem. Also you will be surprised how many people will offer you help such as opening doors, helping you put packages in the car etc.
Most importantly you know you are not alone, a feeling we all need.
As Betty said stay positive ! My best regards, Gloria
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dottiesport
- Posts: 24
- Joined: Mon Nov 28, 2011 10:07 am
- Location: Bradenton, Fl.
Re: New to the forum? post a quick introduction
A few people have mentioned getting leg cramps, which I also get from time to time. I wanted to share something that I have been using to stop the cramps in a short time.....yellow mustard, if you have packets use a packet also keep by your bed when you have it happen it is next to you, or get a jar of yellow mustard and take one tablespoon, keep a packet in your wallet or handbag, it really works!!!!
Dottie
Dottie