The Orthostatic Tremor Forum (archive)

Greetings to all.
Thank you, Gloria, for making possible for us to discuss about this strange condition.

I live in Serbia and I've been trying for years to get the right diagnose for my father. I've been from one doctor to another, and they didn't even got close to anything that is even related to his sympthoms. Most of them had the aditude "he's old, what do you expect" (my father is 69 years old) and one of the doctors even told me that to my face!!!

So I have to take matters in my own hands.

Can anybody help me with this. I need to know the tests that needs to be done so that I can be sure that he has OT. I know about the test for tremor freequency, is there anything else? Eventually I'll find a doctor who can interpret these test results.

My Father has been unable to stand for 4 years now without starting to shake, and aside to that there is nothing else wrong with him. I noticed that in the morning the things get worse or after a long sleep or resting. When he is in motion, everything is fine. He has no problems with walking or doing anything else. But he cannot stand still on his feet for 1 minute straight.

At first it wasn't visible. He just complained that he has to sit down, but now you can see the tremors. Is this normal progression for OT?

Does anyone of you have problem with pain in the knees while standing? Does the tremors comes from the pain or is it connected to weakness in legs? Did anyone tried therapy with magnetic belts for knees? I am going to try that on my father and tell you the results, it might help... who knows...

I understand it is not a brain condition but something else? It is really frustrating when there is not enough information about something... I guess you already felt that way.

I am going to talk to his sisters in 2 weeks, since I have to go to his village where he was born. They also have problems with legs, I just need to see if they have the same symtoms as he does, since I read somewhere (maybe on this same site... I don't know, I've been reading everything I could get my hands on) that it has to do with genetics.

Thank you all for listening. I have a 1001 question about this, but I don't want to bother you with all of them at once.

Take care! And keep this comunity alive! It is wonderfull that it exists! I am sure it will help us all to understand and fight this condition.

Katarina

Hi Katya

As you might have already read other postings on Gloria's wonderful site, it may not be news to you to hear most OTers have gone through a similair situaion with Drs in getting the right diagnosis. I can not believe a Dr actually said that to you. Your Dad is 69 yrs YOUNG!

It does sound from your description of his condition that he has OT, but I would seek the opinion of a good neuologist to either confirm or deny this. Not knowing is the worst part from my experiece. Confine your visits to neurologists until you find one who not only knows the condition, but understands it as the disability it is. A good neuro will be able to run through a series of simple tests to determine if your Dad has OT. Afterwards, a sympathetic GP is almost essential in helping both of you to cope with the OTs.

My first attack of the tremors (sounds like a sci-fi movie title!) was quite aggressive, however, I think it can be said that the first response to the onset of the tremor is 'have to sit, NOW!"

I have not experienced any knee pain, but I can say the tremor puts a great deal of strain on the legs, I do not think it has any connection to leg weakness. I also do not know if magnetic belts will help, but, please, let us know if it does. I have tried almost every natural therapy available with mixed results, going from nil, to helpful in the short term.

From my understanding, and don't take this as 'gospel', OT is a brain condition in that it is a result of brain chemicals not doing the right thing, or going the wrong way, or going the right way in too much of a hurry. Take your pick! Does anyone have a better description?

Onto genetics! My Dad had Essential tremors, though that is my diagnosis. There was no name for it then, but I remember his hands shaking.

Good luck, Katya. You are a caring daughter and I am sure your Dad appreciates your help and concern. It is an important component in the battle against OT.

Shakey Cheers and Best Wishes
Margie

ps this makes only 1000 more questions (999, actually, if I'm right you have another query which I am going to now), so keep them coming.

Hi Margie!

So nice to meet you! :)))

it does seem that OT runs in a family (or at least similar genes does). I wonder if real illment can be avoided by some way of life... but maybe it can only help ease the symptoms.

This is the era of the brain exploration and genetics! I am convinced that they will find the cure for many diseases in very near future!

I am waiting for the magnetic stripes for my fathers knees.. I will keep you informed of a progress. I know now that a magnetic belt for spine does not help in tremors, but it did a miracle on his back pain.

I am trying now to find a good doctor who will help us. I still haven't got the chance to read experiences from all the people on this forum, but I am reading every moment I can. It is so sad that all of you got through the same problems with doctors. As if the OT is not terrible enough without the burden of not knowing what is happening to you.

You say that your first attack was sudden and horrible? I wonder how many people on this forum had the distinctive first attack, and how many of them had OT walking through a backdoor in their life.

I will make a pole about that and some other things as soon as I manage to read all the previous posts (to keep myself from repeating things that are already said). It might help determine some of the things that will ease further dealing with OT or help fight it!

Warm hug from northern hemisphere!
Cat

Katya: Welcome to the site and I do hope that it will help you in your search for a proper diagnosis for your father. Sounds like you are on the right track. There is no question that there is a tremendous number of doctors that do not have a clue about OT. Here is a bit of information that might help give you a little direction. First your statement " I understand it is not a brain condition" is not correct. OT is a neurological movement disorder, therefore I suggest you take your father to a medical institution that has a neurological movement disorder department with neurologists whose specialty is movement disorders. The pain that your father is having in his knees is probably due to another health condition such as arthritis, etc. As you probably know from the home page, OT is a very defined disease. Also, research has not proven that there is a genetic connection however, similar predispositions might evolve. I hope that the many coping skills that other OTers have shared will help your father as well. Just having a" name" for his problem will help him mentally with his situation. Good luck and please keep us posted, Gloria