Caring
08-16-2001, 09:50 PM
Neuro says my brain MRI, although it does not show any tumors or life threatening problems, something is there, and no one has a clue what it is! Not the
X-ray tech, not the Neuros, nobody. He says the area that it is though, would be in no way connected to my tremors.
So I asked my Neuro about Parkinson's and if there was any way something would show up in an MRI that might indicate if someone has it, and he said usually not.
He insists I do not have Parkinson's (and I am certainly not hoping for it.) He is basing this on the violent movements of my tremors which he says are not Parkinson type tremors (head bobbing or rolling into a fixed position for a few seconds, making hideous faces or bulging out my eyes, shoulder shrugging, arm rolling or hand flapping, and occasional thrusting from my back)the fact that I still have expressions in my face, I do not talk soft and monotone, and I am too young. Is this true? With what I've told you, does that rule out Parkinson's?
Now maybe I don't have Parkinson's, but the fact that Sinemet (generic) works for my tremors, and many other symptoms are relieved by it, has me wondering. I have many of the symptoms of someone with Parkinson's, but the fact that I don't have the above mentioned ones, does that exclude me? (Like I said, it's not that I want Parkinson's, but it sure looks to me like that's what I've got.)
Anyway, I am considering seeing a Movement Disorder Specialist now. I know most of you have sources for them, and any website you can recommend would be helpful. Thank you so much.
Also, do any of you take Neurontin? My Rheumatologist prescribed it for me, for my pain, because he thinks I might have some nerve damage. I was wondering about your experiences with Neurontin, and if you have ever taken it with Sinemet?
Any input would be greatly appreciated. Thank you again for your help. I'm really getting frustrated, and a little depressed, over this whole "mystery" condition.
Sincerely,
Caring
X-ray tech, not the Neuros, nobody. He says the area that it is though, would be in no way connected to my tremors.
So I asked my Neuro about Parkinson's and if there was any way something would show up in an MRI that might indicate if someone has it, and he said usually not.
He insists I do not have Parkinson's (and I am certainly not hoping for it.) He is basing this on the violent movements of my tremors which he says are not Parkinson type tremors (head bobbing or rolling into a fixed position for a few seconds, making hideous faces or bulging out my eyes, shoulder shrugging, arm rolling or hand flapping, and occasional thrusting from my back)the fact that I still have expressions in my face, I do not talk soft and monotone, and I am too young. Is this true? With what I've told you, does that rule out Parkinson's?
Now maybe I don't have Parkinson's, but the fact that Sinemet (generic) works for my tremors, and many other symptoms are relieved by it, has me wondering. I have many of the symptoms of someone with Parkinson's, but the fact that I don't have the above mentioned ones, does that exclude me? (Like I said, it's not that I want Parkinson's, but it sure looks to me like that's what I've got.)
Anyway, I am considering seeing a Movement Disorder Specialist now. I know most of you have sources for them, and any website you can recommend would be helpful. Thank you so much.
Also, do any of you take Neurontin? My Rheumatologist prescribed it for me, for my pain, because he thinks I might have some nerve damage. I was wondering about your experiences with Neurontin, and if you have ever taken it with Sinemet?
Any input would be greatly appreciated. Thank you again for your help. I'm really getting frustrated, and a little depressed, over this whole "mystery" condition.
Sincerely,
Caring
Sponsor
Googy
08-16-2001, 11:58 PM
Hi Caring,
Just hang in there,there has to be an answer.I'm glad you are going to see a MDS.What throws me is all that jerking sounds like Dyskinesia.My husband does that,and that the Sinemet helps your tremors.We are here for you.This is a toll free # to find a Movement Disorder Specialist. 1-888-400-2732.I havent used this # but give it a try.
Love,
Googy
[This message has been edited by Googy (edited 08-16-2001).]
Just hang in there,there has to be an answer.I'm glad you are going to see a MDS.What throws me is all that jerking sounds like Dyskinesia.My husband does that,and that the Sinemet helps your tremors.We are here for you.This is a toll free # to find a Movement Disorder Specialist. 1-888-400-2732.I havent used this # but give it a try.
Love,
Googy
[This message has been edited by Googy (edited 08-16-2001).]
Pelicangirl
08-17-2001, 08:04 AM
Hi Caring,
I'm glad you are deciding to see an MDS. That's probably the only way you'l get an accurate diagnosis.
Yes, if you react well to Sinemet, that's certainly an indication that you have Parkinson's. of course, it could be Essential Tremor, too, or even Tourettes. But a movement disorder specialist will be able to answer all these questions. That's what they specialize in.
I don't have any websites for you since I found mine by a referral and then another referral for the second one, but maybe someone else does. Good luck and we'll be waiting to hear.
Where do you live?
Pelicangirl (aka Ruth)
I'm glad you are deciding to see an MDS. That's probably the only way you'l get an accurate diagnosis.
Yes, if you react well to Sinemet, that's certainly an indication that you have Parkinson's. of course, it could be Essential Tremor, too, or even Tourettes. But a movement disorder specialist will be able to answer all these questions. That's what they specialize in.
I don't have any websites for you since I found mine by a referral and then another referral for the second one, but maybe someone else does. Good luck and we'll be waiting to hear.
Where do you live?
Pelicangirl (aka Ruth)
Caring
08-17-2001, 05:09 PM
Thank you for responding. Ruth, Southern California. :) Where is your MDS Ruth? Are MDS really expensive?
Googy, thank you for the phone #. I've got it written down, and I WILL call.
I've decided I cannot take the Neurontin, just makes me waaaaaay to drowsy.
Oh, about Tourettes, as best I can gather, it is usually heriditary, and shows up earlier in life.
Thank you all for your help.
Sincerely,
Caring
Googy, thank you for the phone #. I've got it written down, and I WILL call.
I've decided I cannot take the Neurontin, just makes me waaaaaay to drowsy.
Oh, about Tourettes, as best I can gather, it is usually heriditary, and shows up earlier in life.
Thank you all for your help.
Sincerely,
Caring
Pelicangirl
08-17-2001, 07:30 PM
Hi Caring,
My goodness, another neighbor! I go to Dr. Hermanowicz in Irvine. He is a wonderful doctor and such a nice man.I could also recommend Jeff Bronstein at UCLA. Another really nice guy.
I don't think MDSs are too much more expensive than the regular doctor. I seem to remember about a $300 charge for the initial visit and then it varied from there on. It all depended on what he did, whether it was a comprehensive exam or just a check-up. On the first visit they take all your records, etc., etc.
I know you probably don't have Tourette's. I just threw that in to let you know that they do treat them also.
If I may ask, where in Southern CA? If you'd rather respond by e-mail, mine is onthedock@aol.com.
Pelicangirl (aka Ruth)
My goodness, another neighbor! I go to Dr. Hermanowicz in Irvine. He is a wonderful doctor and such a nice man.I could also recommend Jeff Bronstein at UCLA. Another really nice guy.
I don't think MDSs are too much more expensive than the regular doctor. I seem to remember about a $300 charge for the initial visit and then it varied from there on. It all depended on what he did, whether it was a comprehensive exam or just a check-up. On the first visit they take all your records, etc., etc.
I know you probably don't have Tourette's. I just threw that in to let you know that they do treat them also.
If I may ask, where in Southern CA? If you'd rather respond by e-mail, mine is onthedock@aol.com.
Pelicangirl (aka Ruth)