[youngwife]

My husband has a movement disorder that is possibly secondary to central pontine myelinolysis and polyneuropathy. No one has put a name on it yet. he has constant right arm tremor while awake, but is stops when he sleeps. sometimes when he is sitting and watching tv his head will tilt to one side and then he has small involuntary muscle jerks in the neck or shoulder. When he stands up with physical therapy ( he is wheelchair bound right now) he develops trunk tremors and the head/neck tremors and his arm tremor gets much worse and faster. He has possibly some kind of involuntary movement going on with his eyes and mouth ocasionally too. When he is relaxed he just has the arm tremor. But whenever he is frustrated or using more than one muscle group at one time (like when therapy gets him exercising and trying to stand) he gets tremors or jerks going other places and he statrs having speech problems.

We have been to a family doctor who says she can't diagnos it because she does not have enough expierence with this type thing. (thank the LORD she is honest)

The neurologist says he is not ready to put a name on it yet, but I distinctly heard him mumble dystonia under his breath at the first visit.

I mean I guess it doesn't really matter because he is getting some treatment with physical thearpy, propanolol and baclofen. But I 'd like a name on it.

Is there a special type of doctor that just diagnoses movement disorders? Who diagnosed you?

Thanks

[dcb123]

Originally Posted by youngwife

My husband has a movement disorder that is possibly secondary to central pontine myelinolysis and polyneuropathy. No one has put a name on it yet. he has constant right arm tremor while awake, but is stops when he sleeps. sometimes when he is sitting and watching tv his head will tilt to one side and then he has small involuntary muscle jerks in the neck or shoulder. When he stands up with physical therapy ( he is wheelchair bound right now) he develops trunk tremors and the head/neck tremors and his arm tremor gets much worse and faster. He has possibly some kind of involuntary movement going on with his eyes and mouth ocasionally too. When he is relaxed he just has the arm tremor. But whenever he is frustrated or using more than one muscle group at one time (like when therapy gets him exercising and trying to stand) he gets tremors or jerks going other places and he statrs having speech problems.

We have been to a family doctor who says she can't diagnos it because she does not have enough expierence with this type thing. (thank the LORD she is honest)

The neurologist says he is not ready to put a name on it yet, but I distinctly heard him mumble dystonia under his breath at the first visit.

I mean I guess it doesn't really matter because he is getting some treatment with physical thearpy, propanolol and baclofen. But I 'd like a name on it.

Is there a special type of doctor that just diagnoses movement disorders? Who diagnosed you?

Thanks

Dystonia is a general term used for a unknown movement disorder.

You have to find a neurologist that specializes in Movement Disorders.
There are several disorders that be described in your Husbands case.
If you live a large metropolitan area there should be one that fits your needs.
Also if he hasn't had a MRI done he should have one asap. But a qualified Neurologist would know this.
I live in Canada and the University of Manitoba (School of Medicine) have a specialized a clinic only for Body Movement Disorders.
I have Parkinsons Disease and they zeroed in to it pretty fast.
I am not doing any better but at least I know what my falling and jerking was about.
Good luck to you both. Look after each other.

David

[dcb123]

Originally Posted by dcb123

Dystonia is a general term used for a unknown movement disorder.

You have to find a neurologist that specializes in Movement Disorders.
There are several disorders that be described in your Husbands case.
If you live a large metropolitan area there should be one that fits your needs.
Also if he hasn't had a MRI done he should have one asap. But a qualified Neurologist would know this.
I live in Canada and the University of Manitoba (School of Medicine) have a specialized a clinic only for Body Movement Disorders.
I have Parkinsons Disease and they zeroed in to it pretty fast.
I am not doing any better but at least I know what my falling and jerking was about.
Good luck to you both. Look after each other.

David

Youngwife
Uncertain as to whether you were sending your last message to me?
My best response would be to go on your computer and do a search for.
Neurologist specializing body movement disorders.
Also add the name of the largest city closest to where you live after you type disorders.

The type and quality of the Neurologist you are seeking will be connected to a large Hospital, Clinic or some other medical facility or University etc.

Remember, Neurologists in this field of medicine are rare and if you find one make contact immediately. Most won't deal with you directly. They would prefer to have you referred to them by another Doctor.
Most probably your family Doctor.
When you locate a Neurologist or a Neurological facility you might try to contact them directly. Or you can give the name and address to your Family Doctor for referral.

Whichever Neurologist you seen before is a discredit to his profession.

After I was referred by my Family Doctor I was put on a waiting list and I had to wait one year to see a specialist.!
I live in a city of close to 700,000 persons and there are only three Neurologists who are deemed to be specialists in this field of Neurology.

Start your researching and ask others, family, friends, medical personal to assist you.

I know how difficult this must be for you, but be brave and as persistent as you can be.

David
Canada

[dystoniadisease]

I am not a doctor but have 18 years experience with dystonia, a neurological disorder evidence by involuntary muscular contractions. It sounds as if the suffering is related to a few dystonias since each muscle or muscle group has a separate name. I suffer, but no longer have the spasms, from the eyelid called blepharospasm. The term for the mouth, jaw, tongue is called Meige Syndrome. The neck, which is the most common, is called cervical dystonia and the legs and trunk is generalized dystonia. I have been helped *edit* from a combination of naturally organic whole food supplements. *edit*. Steve

Originally Posted by youngwife

My husband has a movement disorder that is possibly secondary to central pontine myelinolysis and polyneuropathy. No one has put a name on it yet. he has constant right arm tremor while awake, but is stops when he sleeps. sometimes when he is sitting and watching tv his head will tilt to one side and then he has small involuntary muscle jerks in the neck or shoulder. When he stands up with physical therapy ( he is wheelchair bound right now) he develops trunk tremors and the head/neck tremors and his arm tremor gets much worse and faster. He has possibly some kind of involuntary movement going on with his eyes and mouth ocasionally too. When he is relaxed he just has the arm tremor. But whenever he is frustrated or using more than one muscle group at one time (like when therapy gets him exercising and trying to stand) he gets tremors or jerks going other places and he statrs having speech problems.


I am not a doctor but have 18 years experience with dystonia, a neurological disorder evidence by involuntary muscular contractions. It sounds as if the suffering is related to a few dystonias since each muscle or muscle group has a separate name. I suffer, but no longer have the spasms, from the eyelid called blepharospasm. The term for the mouth, jaw, tongue is called Meige Syndrome. The neck, which is the most common, is called cervical dystonia and the legs and trunk is generalized dystonia. I have been helped others with these with help I received from a combination of naturally organic whole food supplements. Ever since I received my relief, I have been devoted to stop the suffering just as I have for myself. Steve
We have been to a family doctor who says she can't diagnos it because she does not have enough expierence with this type thing. (thank the LORD she is honest)

The neurologist says he is not ready to put a name on it yet, but I distinctly heard him mumble dystonia under his breath at the first visit.

I mean I guess it doesn't really matter because he is getting some treatment with physical thearpy, propanolol and baclofen. But I 'd like a name on it.

Is there a special type of doctor that just diagnoses movement disorders? Who diagnosed you?

Thanks