New to the forum? post a quick introduction

[mait45]

I live in Göteborg,. Sweden. I have just got my diagnosis after at least 15 years of suffering.. I am very glad to have found this website and to understand that I am not the only one with this problems.
Thank you very much
Mait

[admin]

Updates on the Omaha Research and Meeting can be found at the following link:

http://bit.ly/OmahaUpdate_0704

[Burnie]

I have been experiencing orthotic tremor for three to four years. I have been to two neurologists in Orlando, Florida. The first gave me two different EMG tests that were in the normal range. He then sent me to a movement disorder neurologist who diagnosed orthotic tremor. She prescribed Clonozepam which did nothing for me. My biggest problem is leg weakness with prolonged standing. Like others on this site, I am always looking for a place to lean or sit. Nevertheless, I walk two miles per day with no problems and go to the senior center gym where I use nine different machines for arm and leg strengthening. This really helps me to remain functional. I have traveled to Peru & Ecuador, including hiking to the top of Macchu Picchu and hiking the Glapagos islands which is very rocky terrain. As soon as we got off our boat and stood on the Galapagos beach, I had problems with prolonged standing, so I had to sit while the guide gave us information. On my trips, I just tell the guide that I do not want to offend him, but due to leg weakness I have to find a place to lean or sit. They have all been very supportive. I think it is important that they understand that I am not ignoring or appreciating their expertise. My wife and I plan to go to Australia and New Zeland in January, so please wish us luck. We love to travel, but going thru airport security and customs/immigration is extremely difficult for me. I do have a portable stool that folds up into a little case--like one would use for an umbrella--and I can use that in emergencies. I am also thinking about getting a type of cane which has a little fold-out side chair that I saw a man use when standing in the line at the bank. I am able to mow my lawn, garden, walk, exercise, even run, but I just cannot stand for more than a few--very few-minutes!

[admin]

Mait

Thank you for joining the forum from Göteborg and welcome! There are many people here from all over the world, hopefully they will join in to welcome the new members and discuss any challenges that OT brings:

[admin]

Hi Burnie

Welcome to the forum!

On my trips, I just tell the guide that I do not want to offend him, but due to leg weakness I have to find a place to lean or sit. They have all been very supportive. I think it is important that they understand that I am not ignoring or appreciating their expertise.

That sounds like very good advice and, they all sound like terrific trips!

Have you seen the OT travel card? It doesn't fix any problems but some people have found it to help.

http://www.orthostatictremor.org/ot-travel-card.html

[admin]

Hi Nancy

I recently felt a need to register and share my experience with prism eyeglasses. I too have had good results and will continue posting on the discussion page "Eye related movement disorder".

We are very glad that you registered, The discussion about "Eye related movement disorder" is very interesting-

link to discussion about Prism glasses - Eye related movement disorder

best regards,

[Lena]

Hi,

I am Lena from Chicago and am a new member. I was diagnosed about 3 months ago but feel I've had this for quite some years now. I thought it was related to arthritis in my knees but then began wondering why I could walk but not stand for any length of time. I am 68. I have adapted by using stools, leaning, sitting, rushing off for some reason or other but finally decided I needed more information. I have seen a neurologist twice but don't feel he has any real understanding of how this impacts my life and isn't interested in helping me other than with a prescription and seeing me again in 4 months. I won't be going back. If anyone knows someone in the Chicago area who is a good, caring doctor with understanding of orthostatic tremor, please let me know. He put me on clonazepam twice a day. I can identify with so many issues that everyone has mentioned and realized that I have become extremely reclusive and don't really want to go anywhere but that is not realistic. I am trying to hang in there and find ways to improve my life and deal with this. Thank you for being such a support during my realization phase. You are an inspiration to me as I feel at the beginning of a journey that doesn't have an end. Take good care everyone.

[gloria]

Hello Lena: Welcome as a new registered member and I'm so pleased that you have posted on the forum where you are now part of the OT community of friends who really understand life with OT and you will nolonger feel so alone. Perhaps to find a new neurologist in the Chicago area you might try calling a large medical insititution with a Neurological Movement Disorder Center and inquire about making an appointment with a staff neurologist familiar with OT who will be able to give you proper testing and care. Keep us posted on how you are doing? Gloria

[lindgold]

This is the first time I've posted. About 8 years ago I was diagnosed with "shaky leg syndrome" in my left leg. It wasn't really a major problem unless I had to stand in line for a long time, which was not very often. Walking was never a problem all these years.

After that diagnosis, about 4 years ago I got an extremely severe case of shingles in that leg which took about a month to go away. It was only in the nerves, no rash at all.

About 6 months ago I started to have extreme pain in the calf of that leg after walking only about 20 ft or so, sometimes less. My doctor is kind of skeptical that it's caused by either of the conditions. I also am experiencing some weakness also.

I would like to know if anyone else has experienced this calf pain which seems to be maybe muscular or could it be the affected nerves there. It's not a sharp pain.

[gloria]

lindgold : Thank you for posting, this is important because posting collectively creates a pool of OT information. Overtime we can pick from this information what is OT and what is not. We have had a number of people reporting leg cramps however, being diagnosed with "shaky leg syndrome" in one leg is more unusual. I have had OT for 30 years and it is only recent years that I have noticed leg cramping. My neurologist and myself believe that I can control it by positioning my legs at night in a certain way because the messages from the brain are blocked in some way. In fact as I'm sitting here writing this message there is a cramp in my leg starting to get cranky. If you wish is read other complaints of leg cramping go to SEARCH at the upper right hand side of the page and type in ( leg cramps).
Hope to hear more posts from you and others with similar experiences. Gloria

[Foster]

Hello everyone, This is my first post, my name is Shirley, I am 68 yrs. retired & live in Edmonton, Canada in the summer & in Palm Springs, Ca. the rest of the year. I have had OT symptoms for 20+ yrs. Have had a few health issues, car & motorcycle accidents, but otherwise in very good shape. When I first started to notice I couldn't stand without shaking, I mentioned it to my GP she basically ignored me, this was about 2005. After all my complaining she finally sent me to a Neurologist in 2008. He picked it up instantly (16hz) although he had never seen it in 30 yrs. of practice, his partner had only seen it once in 40 yrs. Needless to say they were very excited & turned from very serious Drs. to a couple of guys that had just won the jackpot in Vegas!!! I of course was thrilled I was not crazy. I was put on clonazepam 1mg x3 per day, until I felt better then I could reduce the dosage. I turned into a zombie that slept all the time, but sure was relaxed...
I also have a cousin who is 85 yrs. & has OT as well so hereditary in my family. I am trying to get thru all the info on this site & have learned so much from all of you, it has changed my way of thinking in so many ways.
It seems most of you could teach a few classes in Med School to many Drs. around the world about this strange condition.
I'll write more later, I have a lot of questions, & a few idea's that work for me. I have all the OT symptoms everyone speaks about, some of you have so many other issues you are dealing with its mind boggling... I admire all of you for your attitude, humour & quest for knowledge with this odd condition.
TTYL (talk to you later). My bulldog Tyson is calling me, it's our nap time, he never wears his wristwatch but always seems to know the time.
Cheers & All the Best. Shirley

[admin]

Congratulations to Amelia Davies on being nominated for the Young People of the Year award, an award given to young people that give to others. A wonderful article about Amelia who among all of her other activities helps her mum who has OT.

"Amelia is a popular and hardworking young girl, who has sacrificed a lot to ensure her mum is looked after. She is a great credit to her family and college."

"We need to give young people the respect they deserve and set up the best as positive role models for others to copy rather than focusing on the small number who appear in the press for negative reasons." Tony Gearing, a former journalist that founded the award.


http://bit.ly/YoungPeopleAward

[gloria]

Hello Shirley: Thanks for a great introductory posting. You have a true perspective of OT and will be waiting for your " lot's of questions and a few ideas that work for you". That is what the Forum is all about helping each other and adding more information about life with OT. Gloria

[moira]

Today I walked into the Neurologist office with one condition and walked out with two! Talk about a bargain. I am diagnosed with Orthostatic Tremor and Peripheral neurothapy.

At least now I am beginning to understand why I have been so lazy the past 6 years and blamed my tremors on lack of exercise but when I exercised I was a write off for days. I can now put things into context and start a plan, dump the guilt and embrace a way forward. I can be grateful I do not have Parkinsons or MS, which I had pretty much ruled out anyway.

I am looking forward to joining your forum.

Moira

[gloria]

moira: Welcome new registered member of our OT community. You mentioned perhaps your OT symptoms started six years ago. Can you associate anything that might have caused the onset? I like what you said " I can now put things into context and start a plan, dump the guilt and embrace a way forward." Learning to work around OT is a good plan! You now have a lot of new OT friends to ask questions of "this thing that invades our lives". All the best, Gloria