Caring
09-23-2001, 10:40 PM
Well, I told you all I would keep you updated. My official diagnosis is Dopamine Responsive Dystonia. The Neurologist came to this conclusion because of the violent nature of my movements, and lack of certain telltale signs with respect to other diseases such as Parkinson's.
He watched some file video of people with this condition, and although the condition is quite rare, and even more rare when developing in adults, also when such a condition does not run in my family, he is absolutely certain this is what I have. After doing some research on my own, I am confident he has reached the correct conclusion/diagnosis.
Many symptoms for people with Dystonia are similar to Parkinson's, but there are also distinct differences. So although I am happy to say I do not have Parkinson's, I have a close cousin, though a much rarer condition.
The condition will probably not progress into something worse, and, in a few rare instances, people have even recovered from it. My neurologist warned me not to be too hopeful about this going away though, because it usually doesn't.
Over the next several months, my Neurologist and I will work on refining my medication/medications for better control and hopefully restore my life to being somewhat normal.
At least now I have a name for this, and some idea on how we can proceed on treating it. I will drop in from time to time to see how everyone is doing, and I thank all of you for your support, encouragement, and advice.
Take Care all.
Sincerely,
Caring
He watched some file video of people with this condition, and although the condition is quite rare, and even more rare when developing in adults, also when such a condition does not run in my family, he is absolutely certain this is what I have. After doing some research on my own, I am confident he has reached the correct conclusion/diagnosis.
Many symptoms for people with Dystonia are similar to Parkinson's, but there are also distinct differences. So although I am happy to say I do not have Parkinson's, I have a close cousin, though a much rarer condition.
The condition will probably not progress into something worse, and, in a few rare instances, people have even recovered from it. My neurologist warned me not to be too hopeful about this going away though, because it usually doesn't.
Over the next several months, my Neurologist and I will work on refining my medication/medications for better control and hopefully restore my life to being somewhat normal.
At least now I have a name for this, and some idea on how we can proceed on treating it. I will drop in from time to time to see how everyone is doing, and I thank all of you for your support, encouragement, and advice.
Take Care all.
Sincerely,
Caring
Sponsor
Lory
09-24-2001, 12:57 AM
Originally posted by Caring:
Well, I told you all I would keep you updated. My official diagnosis is Dopamine Responsive Dystonia. The Neurologist came to this conclusion because of the violent nature of my movements, and lack of certain telltale signs with respect to other diseases such as Parkinson's.
He watched some file video of people with this condition, and although the condition is quite rare, and even more rare when developing in adults, also when such a condition does not run in my family, he is absolutely certain this is what I have. After doing some research on my own, I am confident he has reached the correct conclusion/diagnosis.
Many symptoms for people with Dystonia are similar to Parkinson's, but there are also distinct differences. So although I am happy to say I do not have Parkinson's, I have a close cousin, though a much rarer condition.
The condition will probably not progress into something worse, and, in a few rare instances, people have even recovered from it. My neurologist warned me not to be too hopeful about this going away though, because it usually doesn't.
Over the next several months, my Neurologist and I will work on refining my medication/medications for better control and hopefully restore my life to being somewhat normal.
At least now I have a name for this, and some idea on how we can proceed on treating it. I will drop in from time to time to see how everyone is doing, and I thank all of you for your support, encouragement, and advice.
Take Care all.
Sincerely,
Caring
Thanks for the update, do keep us informed. Lory
Well, I told you all I would keep you updated. My official diagnosis is Dopamine Responsive Dystonia. The Neurologist came to this conclusion because of the violent nature of my movements, and lack of certain telltale signs with respect to other diseases such as Parkinson's.
He watched some file video of people with this condition, and although the condition is quite rare, and even more rare when developing in adults, also when such a condition does not run in my family, he is absolutely certain this is what I have. After doing some research on my own, I am confident he has reached the correct conclusion/diagnosis.
Many symptoms for people with Dystonia are similar to Parkinson's, but there are also distinct differences. So although I am happy to say I do not have Parkinson's, I have a close cousin, though a much rarer condition.
The condition will probably not progress into something worse, and, in a few rare instances, people have even recovered from it. My neurologist warned me not to be too hopeful about this going away though, because it usually doesn't.
Over the next several months, my Neurologist and I will work on refining my medication/medications for better control and hopefully restore my life to being somewhat normal.
At least now I have a name for this, and some idea on how we can proceed on treating it. I will drop in from time to time to see how everyone is doing, and I thank all of you for your support, encouragement, and advice.
Take Care all.
Sincerely,
Caring
Thanks for the update, do keep us informed. Lory
Pelicangirl
09-24-2001, 11:15 AM
Hi Caring,
At least you know what you're up against and can take some steps to take care of it. That's so important. Just knowing, I think, relieves your mind a little. Please let us know how you're doing and visit this board often. Who knows, maybe your condition could be one of those that will help find a cure for PD.
Pelicangirl (aka Ruth)
At least you know what you're up against and can take some steps to take care of it. That's so important. Just knowing, I think, relieves your mind a little. Please let us know how you're doing and visit this board often. Who knows, maybe your condition could be one of those that will help find a cure for PD.
Pelicangirl (aka Ruth)
Googy
09-24-2001, 06:23 PM
Thanks Caring,
You have at last found the nature of your health problems.What meds did he put you on now?
Blessings,
Googy
You have at last found the nature of your health problems.What meds did he put you on now?
Blessings,
Googy
Caring
09-24-2001, 07:45 PM
Thank you all so much. Well Googy, he still has me taking Sinemet generic, because we know it works. He offered to prescribe Sinemet CR instead, but I am concerned if the Dystonia acts up, that I will not be able to get the quick relief I do from Sinemet.
Not often, but sometimes, and I think it is a visual stimulation thing, when things are busy around me, or sometimes when listening to music or lots of noise, it seems to set them off. I could be having a great time, with my Dystonia the farthest from my mind, and suddenly I will start making faces--eye bulging, teeth clenching, neck torking or arm flapping, etc. But then I just take my dose early, and within less than half an hour, it calms down. I've heard that you can't get those results from Sinemet CR.
So the Neuro will have me use the Sinemet for a few months, and see if there is any progress, or if he needs to refine by adding any other medications. Adding on something to extend the effectiveness of the medication would be a good idea, because that way when the Dystonia acts up, I can still get quick relief with the Sinemet, yet have it last longer instead of wearing off too soon.
I may talk to him about doing this before our next appointment in a couple of months. I'll see how it's all coming along.
Will keep you all updated. Maybe we can find something interesting from all this. Take Care all, and thank you again.
Sincerely,
Caring
Not often, but sometimes, and I think it is a visual stimulation thing, when things are busy around me, or sometimes when listening to music or lots of noise, it seems to set them off. I could be having a great time, with my Dystonia the farthest from my mind, and suddenly I will start making faces--eye bulging, teeth clenching, neck torking or arm flapping, etc. But then I just take my dose early, and within less than half an hour, it calms down. I've heard that you can't get those results from Sinemet CR.
So the Neuro will have me use the Sinemet for a few months, and see if there is any progress, or if he needs to refine by adding any other medications. Adding on something to extend the effectiveness of the medication would be a good idea, because that way when the Dystonia acts up, I can still get quick relief with the Sinemet, yet have it last longer instead of wearing off too soon.
I may talk to him about doing this before our next appointment in a couple of months. I'll see how it's all coming along.
Will keep you all updated. Maybe we can find something interesting from all this. Take Care all, and thank you again.
Sincerely,
Caring
Bruce
09-25-2001, 03:01 PM
I can't ewmember if I told this, but I have been on Sinemet CR for about 11 years and my neurologist insisted I switch to Sinemet. The day I tried to switch was a nightmare. I would either get symptoms of overdose (dyskinesia) or ubder dosed (weakness). The Sinemet works well as a part of the first morning dose, because it does work much faster then the CR, but I never could get the Sinemet regulated because of the sudden peaks and valleys. It just didn't work ffor me.
Caring
09-25-2001, 05:31 PM
Wow Bruce, thanks for the info. I guess the Sinemet has just been there when I needed it, so I'm a little afraid to give it up. Hmmm, maybe SinemetCR would be a good idea though, because I'd really like to get better control of this. It's mostly under control, but if the darn stuff wears off early, well it's not pretty.
Can Dopamine levels be depleted or Sinemet be less effective according to what someone eats, or if they are participating in certain activities? I suspect this may somehow be related to why some days I have no problems, and other days I do.
Thanks again Bruce, everyone. :)
Take Care now.
Sincerely,
Caring
Can Dopamine levels be depleted or Sinemet be less effective according to what someone eats, or if they are participating in certain activities? I suspect this may somehow be related to why some days I have no problems, and other days I do.
Thanks again Bruce, everyone. :)
Take Care now.
Sincerely,
Caring
Bruce
09-25-2001, 07:07 PM
Caring, You asked the right person regarding eating and taking Sinemet. Avoid eating any food containing protein, when taking Sinemet. Protein inhibits the absorption of Sinemet, therefor some of the Sinemet is broken down in the G.I. tract and is not absorbed as Sinemet. I try to watch what I eat with in an hour before and after taking Sinemet. Their are different opinions about the timing. Some say take the pill 30 min. before eating, but, in my opinion, 30 min. may not be long enouh for a pd patient, because the muscles in our G.I. tract move more slowly and might take an hour or more for our stomach to empty. This is why constipation is a common symptom in pd patients.
I like the Sinemet CR to take through out the day, because it is released into the blood stream more slowly and it is much easier to regulate without side effects,
As you might know I had the DBS surgery and am still going through the adjustments. The neurologist increased the voltage and after several days, I started getting severe dyskinesia which indicates I am over stimulated. I increased the time between doses from 3 1/2 hrs to 4 hrs, and now the dyskinesia is gone. It seemed like I had to be very precise on the time between doses when I tried to take Sinemet.
I like the Sinemet CR to take through out the day, because it is released into the blood stream more slowly and it is much easier to regulate without side effects,
As you might know I had the DBS surgery and am still going through the adjustments. The neurologist increased the voltage and after several days, I started getting severe dyskinesia which indicates I am over stimulated. I increased the time between doses from 3 1/2 hrs to 4 hrs, and now the dyskinesia is gone. It seemed like I had to be very precise on the time between doses when I tried to take Sinemet.
Caring
09-26-2001, 03:34 PM
Thank you Bruce. Glad to hear you are doing better. Thank you for the advice on protein, I will definitely watch my protein now with respect to timing for my medication.
Oddly, I really don't have any side effects at all from the Sinemet generic. My Neurologist was happily surprised to hear that too.
Maybe the Sinemet CR would be a better way for me to go, though I still haven't decided if the trade off is worth it.
I'm still wondering what the relation is about tremors acting up in busy environments (even fun places) and loud noises (even nice music.) Have they actually found Dopamine to effect this?
Thank you again. Take Care now.
Sincerely,
Caring
Oddly, I really don't have any side effects at all from the Sinemet generic. My Neurologist was happily surprised to hear that too.
Maybe the Sinemet CR would be a better way for me to go, though I still haven't decided if the trade off is worth it.
I'm still wondering what the relation is about tremors acting up in busy environments (even fun places) and loud noises (even nice music.) Have they actually found Dopamine to effect this?
Thank you again. Take Care now.
Sincerely,
Caring
Bruce
09-27-2001, 12:44 AM
I have more dyskinesia when in public places and I have assumed it was caused by stress.
My switching to 4 hrs between doses didn't work so well. I finally got my wake up call, after three days of feeling weak. It kind of sneaked up on me and it came to me this evening what was causing it.
Bruce
My switching to 4 hrs between doses didn't work so well. I finally got my wake up call, after three days of feeling weak. It kind of sneaked up on me and it came to me this evening what was causing it.
Bruce
Caring
09-27-2001, 09:33 PM
Thanks again Bruce. Sorry to hear your attempts to change the meds schedule didn't work.
Hope you are doing better now though.
I will keep you all updated on how things are coming along.
Dopamine Responsive Dystonia is pretty close to Parkinson's, so I will still be here a lot, if you all don't mind.
I really do appreciate all of your help, advice, encouragement. Thank you again.
Take Care all.
Sincerely,
Caring
Hope you are doing better now though.
I will keep you all updated on how things are coming along.
Dopamine Responsive Dystonia is pretty close to Parkinson's, so I will still be here a lot, if you all don't mind.
I really do appreciate all of your help, advice, encouragement. Thank you again.
Take Care all.
Sincerely,
Caring
Pelicangirl
09-28-2001, 09:06 AM
Hi Caring,
I had just the opposite effect of Bruce regarding sinemet CR. It took a long time to work and then seemed to drop off quite quickly. I did much better on the regular Sinemet.
Each one of us is different and has a different reaction to the drugs, so you have to decide what is right for you. I did have the protein reaction, though.
Pelicangirl (aka Ruth)
I had just the opposite effect of Bruce regarding sinemet CR. It took a long time to work and then seemed to drop off quite quickly. I did much better on the regular Sinemet.
Each one of us is different and has a different reaction to the drugs, so you have to decide what is right for you. I did have the protein reaction, though.
Pelicangirl (aka Ruth)
johnmichael
11-03-2001, 02:41 PM
Hi- this is for all of you in this group. I'm do not have PD, but I am taking Sinemet25/100. I had polio at age 8 and I'm now 66 and have Post Polio Syndrome, starting about 18 months ago. I have signficant muscle loss--atrophy of the left hand and left leg and major fatigue, difficult breathing, problem with my swallowing and voice. The reason (from my doc)for the Sinemet is to give me better sleep--lots of leg jerking. Now, I'm getting to my question: I have constant muscle twitching all day and all night all over my body, not jerks and not painful but very annoying. Sometimes they are major. I take only one dose of the Sinemet at night. What are the dosages you all take? I am careful about protein intake. Also, the Sinemet does not seem to work on the twitching (called faciculations). Thanks for any response/comments. Hope you all have a great life. Things could be worse, so the saying goes. johnmichael
Bruce
11-07-2001, 03:58 AM
I havn't heard of Sinemet being used for conditions other than Parkinson's. I honestly don't know if your symptoms should be treated with Sinemet.
I take one tablet of Sinemet CR 5x per day plus one tablet of non CR Sinemet first thing in the morning, because it kicks in faster than the CR.
It is common in pd patients like myself, that if I take to much of Sinemet or the other pd drugs that boost the dopamine level, I will get dyskinesia. I am trying to convert from Parlodel to Requip and it is a gradual process, deleting the Parlodel a little at a time and slowly increasing the Requip until I reach the recommended level. A few days ago I increased the Requip to much and had severe dyskinesia. Sinemet, if it is working and you are on the correct dose, usually reduces most of the Parkinson symptoms.
If this is any help to you I take 1 MG of Clonazepam for muscle cramps. It is an anti anxiety drug, and I suppose it relaxes the muscles, relieving the leg cramps.
Bruce
I take one tablet of Sinemet CR 5x per day plus one tablet of non CR Sinemet first thing in the morning, because it kicks in faster than the CR.
It is common in pd patients like myself, that if I take to much of Sinemet or the other pd drugs that boost the dopamine level, I will get dyskinesia. I am trying to convert from Parlodel to Requip and it is a gradual process, deleting the Parlodel a little at a time and slowly increasing the Requip until I reach the recommended level. A few days ago I increased the Requip to much and had severe dyskinesia. Sinemet, if it is working and you are on the correct dose, usually reduces most of the Parkinson symptoms.
If this is any help to you I take 1 MG of Clonazepam for muscle cramps. It is an anti anxiety drug, and I suppose it relaxes the muscles, relieving the leg cramps.
Bruce