The Orthostatic Tremor Forum (archive)

Hello Nola; Thanks for posting on the forum. We have a number of wonderful members from Australia on our membership list. Perhaps you will be able to find someone near by to meet with. That is always a good feeling. Gloria

Hello everyone.
I'm the daughter(51) of a wonderful human(74), that got the diagnosis OT a few months ago.She saw a neurologist 15 years ago or more,because she had serious balance problems.They did some checking and concluded that it was probably a virus on the balance nerve.She was helpless for a long time.
This happened after a research trip to China.Then they moved to China.After a year or so living there she was hit by a towtruck,that hit her so hard she was thrown up in the air and down onto the curb.They examined her at the American emergency room in Beijing.She slowly recovered" a bit".
The balance problems have been there all these years(15-20) years.She learned how to live with it and other conditions like angina,hyperkolestolemi,thyroid,etc etc.She was put on thyroid meds .... and then..shortly after that. the OT problems started....Two and a half years ago she collapsed in a garden center and was taken in an ambulance to the emergency room.They tested for stroke and everything else and could not find anything, even if there was clear signs, that there was something seriously wrong.Strong body contractions and tremor whils standing and lying down.High neuro-acantos numbers,and high proteinlevels and defenately an epileptic seizure.
They sent her from one hospital to another.They did not treat her right.Making her think that it was allin her head.That she needed to see a psycologist.One insult after another.
And finally after 2.5 years her" private" neurologist, sent her to see a new neurologist movement disorder specialist at Haukeland Sykehus,Bergen in Norway.This doctor diagnosed her right away to have OT,but she haven't have the test yet,because we can't find anyone to do the test.
The last 2.5 years I've researched MS,PARKINSON'S,Lou Gerigs.Myastni Graves,Lupus and many,many other medical conditions.When the doctor on the west coast was so sure it it OT, we could actually feel some relief,but now we need this electrical test done ,Where and by whom will this be done?
The neurologist referred her to someone that knew nothing about the testing and claimed she did not have the equipment to do It..My mom came home today heartbroken,What do you do when your specialist does not know where to get you tested?
So today I'm joining you guys to get support or and to give you some support...
This forum is a blessing...I will never give up on researching OT until I feel I can't find anymore info out there Thanks

I'm so sorry that you have been through such a long journey. I just realized that one of the links to a report on the importance of the EMG test and OT in the main site is not working so I've posted it below:

Link to EMG-OT report

And a link to the additional information page:

http://www.orthostatictremor.org/more-i ... on-ot.html

Wishing you and your mother some answers and comfort. I hope that someone can help direct you to a specialist near Oslo with the equipment and familiarity with OT.

Thank you so much for your response.Helpful for our souls(my mom and mine)

Hi, my names is Connie. I first noticed my symptom in 1995. After 7 years, Dr. Gollbe at Robert Wood Johnson Medical Center, New Brunswick, NJ, quickly diagnosed me. I'm in my mid-60s now. While I thought it wasn't supposed to get worse, I find it has. I haven't tried any drugs, and quite frankly have no interest in trying any considering the potential side effects and potential minimal impact. I'm looking for more ways to cope )I use a folding seat when going on guided tours) and a better way to communicate what OT is -- that it's not simply shakey legs and embarrassment. There is pain, sweating profusely when "trapped" trying to stand in line, at networking events, parties, what have you. Mentally, I've tried to approach OT as "simply" a life style adjustment, but it I isn't working. I get very frustrated, angry, and depressed. Like so many of you I was a very active and involved person.

Connie: Thank you for responding to my welcoming letter and have posted your experience with OT here on the forum. I see you live in New Jersey too, I live in Essex County. There are a couple of OT people that occasionally meet with me that live within traveling distance. Yes we too have the frustration, angry and depression that is part of the" OT baggage " but getting together seens to lighten the load. I would like to meet you and have you join us. It just so happens that we are planning to meet on Tues.September 2nd. Maybe Dr. Gollbe or his colleages might have other OT patients who live in NJ that might be interested in meeting with us as well. All the best, Gloria

Hi from the west coast of Canada! A senior male member of my family has been having trouble with the classic symptoms of OT: when standing still for more than a minute or two, he feels his legs want to give out under him, but he can walk well and long. His doctor seems determined to put his condition down to "aging" rather than OT. The way I see it, if "aging" were the explanation, than it would be a common experience for anyone over a certain age (which it clearly isn't).

I joined this group because the problem that gives him the most trouble is unpredictable, significant jerking of the arms and hands. I've done some reading to see if the jerking is related to OT, or if might be something else, and the research seems to be divided about that: some papers say it may be an OT symptom, and others say it's more likely to be a separate situation. Has anyone had the jerking in the arms & hands?

Hello Deborah
Welcome to the OT site. Since being diagnosed with OT in 2009 I have noticed a gradual progression into my hands and arms. They have the same heavy lead feeling as in my legs and my arm/hand strength has become much weaker. When I rest my hands or arms on anything firm (a table or arms of chairs) I have noticed that they begin to shake or jerk. I have to raise them off the surface and give them a shake to stop the movement. Good luck in finding someone who can diagnose your family member.
Regards
Lynette (from Blenheim, New Zealand)

PS: You live in a beautiful part of the world, my husband and I having visited Western Canada a couple of times in the last few years.

Hi Lynette;

Thanks for your welcome!

Deborah

Hello Deborah : I can understand your concern because OT like many movement disorders are over looked by their doctor because they are not familiar with such problems. Your relative is lucky that you are suspicious that it might not be "aging". Perhaps it might be a good idea if he were to be seen by a neurologist at a large medical institution.... preferably one that has a" Movement Disorder Center" to be evaluated and tested (EMG) to determine his situation. Please keep us posted on how things go. Gloria

Hi Deborah, I'm from Edmonton,Ab. Welcome to the site, I was diagnosed in 08, but feel I have had mild symptoms for many years previous to that. In the last year my hands & arms have started to tremor as Lynette says, hand writing & many other tasks are difficult. Do try to get your relative to see a specialist & get a diagnosis. This is the very best route, I was lucky to see a top Neuro here who knew it was OT immediately, with minor testing to confirm.
Best of luck to your relative
Shirley (we snowbird in Palm Springs) so are very fortunate to skip our prairie winters

New member to the forum.... recently diagnosed with OT last week. Very unsure about what my future holds. Feeling a little fragile and a little afraid.

Greetings Lfrasher:
Certainly you are in the right place as a member of a Forum of understanding OT friends! I can easily say from my knowledge of OT that there has been a time when most of us with OT have felt the same emotions that you are feeling at the present time. How long have you been suffering with the symptoms of OT before you were diagnosed ? Did they come on suddenly or over a period of time? In your case do you have a thought as to what might have caused your OT ? Adjusting to your diagnosis is difficult but we are all here to help you, Gloria

Hurray I finally have an answer!!!! I am a 49 yr old RN who just finally got diagnosed today. It was hard to explain to others why I am unable to stand for any length of time, without moving or having to sit down, being a nurse this has become increasingly overwhelming emotionally. I am no way glad that I was diagnosed with this, however I am thrilled I can finally explain why what happens happens and it is very real and it is not me trying to get out of not working. I was diagnosed through a round robin approach: I finally asked my primary physician to refer me to a neurologist because my symptoms were increasing and affecting my ability as a nurse. After many tests, MRIs, and blood work ups the neurologist said I was negative for the usual causes of my symptoms ie. Parkinson, MS, ALS.. and he was unsure what was wrong. He referred me to a muscle specialist (Dr Greenwald). After an hour with her and her colleague (he specializes in Parkinson) neither could figure out what was wrong. She performed an EMG and did more blood work up (which did not show anything significant for diagnosis) then referred me to a Physical Therapist (Renee). I have been working with the therapist for 6 weeks now with no relief. I had a follow up with the muscle specialist today to repeat the EMG and discuss the PT sessions. My therapy appointments are on Thursdays. On Friday my therapist had lunch with a Neurologist who is leaving her practice here in Idaho. During the lunch My therapist began to tell her about me and my symptoms. With in a matter of minutes the neurologist said, "It sounds like she has OT" but she will need an EMG to confirm it. The therapist called the Dr and told her of the conversation and Dr. Greenwald went online to see what type of EMG was needed for diagnosis. Today Dr. Greenwald told me about the events that had taken place and performed the specific EMG and it showed positive for me to have OT. To finally know what is wrong is such a relief. Dr. Greenwald told me of this website and encouraged me to look up information since it is so rare and it is not a usual topic. Being in the medical field I have never heard of this or even anything close. I look forward to becoming a part of this community of support. I have never used a forum before so it will be definitely a new experience for me.

Hello am85row: We have a number of RN's as members with OT on the website so you are not alone by profession. Most have shown a wonderful inner strength of understanding and coping. So pleased to have you as part of this community of support and your help fighting back at OT. Thanks, Gloria