Anticonvulsants?
Em - what do you think you will do with regard to the Sinemet? I can imagine this is a very hard decision. You are desperate for some relief, but you don't want to risk getting worse. You poor dear. I have been thinking about you so much, praying my head off for you and sending you as many healing thoughts as I can. Know that you are loved and supported.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
anyone get worse from anticonvulsants
Hi Em. OMG, I got up on the internet and read about sinemet. If you have not read it, please do so. I can see why you do not want to take it. I am also saying prayers everynight for you.
Please keep us posted on how you are doing. We all do care about you and how you are doing.
I am not pushing religion on you nor anyone else, but I say a prayer to the Blessed Mother a prayer that never fails. I say this everynight and will continue do so. It is called "A Prayer to the Blessed Mother Never Found to Fail" I hope that you do not mind me doing this. I really do care and hope that you find relief real soon.
Please keep us posted on how you are doing. We all do care about you and how you are doing.
I am not pushing religion on you nor anyone else, but I say a prayer to the Blessed Mother a prayer that never fails. I say this everynight and will continue do so. It is called "A Prayer to the Blessed Mother Never Found to Fail" I hope that you do not mind me doing this. I really do care and hope that you find relief real soon.
Charlene
Taking one day at a time
Taking one day at a time
Have you tried anything like Lunesta or Ambien? I know this won't help the RLS, but it might could knock you out enough to get at least a little bit of rest. I've been wracking my brain as to how to help you. Nothing yet, but I'm not giving up. Maybe between all of the experts that are working with you now, someone will come up with something. Prayers for your heart in addition to your body. Have you considered a counselor?
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
anyone get worse from anticonvulsants
Em, for what it is worth, I would definitely go to the Mayo Clinic in Rochester. Please, please do not give up on yourself as we are all here pulling for you and also praying everyday.
Charlene
Taking one day at a time
Taking one day at a time
Dear Emily
In the midst of all our horrible situation, you still think of others:
Who knows what this will do--what might be found because of you. I just Googled the population of the U.S. As of November 27. 2006 at 16:57 GMT, it was 300,293,816. Ten percent of that would be 3,002,938.16 (people with RLS). One percent of that would be 300,293.816 . That's a lot of people, Emily. Too many!
And, that makes me angry. You shouldn't have to suffer, Emily. Not like you are. If treatment is available for other diseases, disorders, whatever---even very rare ones--why not RLS????
I don't know what to do--I wish I did. I know prayer works--it has in my life. Sometimes the answer we get isn't exactly what we want--I also know that.
You are a lovely, intelligent young woman who should be looking forward to the rest of her life. I hear the hopelessness in your words. It's just not right.
I'm praying that you will find some treatment that works for you and find the joy in life that you should have each and every day.
Love
Jan
In the midst of all our horrible situation, you still think of others:
....my case is going to be written up and submitted for publication. I spent lots of time this weekend writing up all my symptoms in detail from onset to present, and answering lots of questions my specialist had for me. We are now sure that all of my symptoms are RLS. (After typing that sentence, I put my head down on my desk and collapsed into tears). I guess it's just a rare manifestation, but it needs to be seen by the experts and researchers so it's good that it will be published.
Who knows what this will do--what might be found because of you. I just Googled the population of the U.S. As of November 27. 2006 at 16:57 GMT, it was 300,293,816. Ten percent of that would be 3,002,938.16 (people with RLS). One percent of that would be 300,293.816 . That's a lot of people, Emily. Too many!
And, that makes me angry. You shouldn't have to suffer, Emily. Not like you are. If treatment is available for other diseases, disorders, whatever---even very rare ones--why not RLS????
I don't know what to do--I wish I did. I know prayer works--it has in my life. Sometimes the answer we get isn't exactly what we want--I also know that.
You are a lovely, intelligent young woman who should be looking forward to the rest of her life. I hear the hopelessness in your words. It's just not right.
I'm praying that you will find some treatment that works for you and find the joy in life that you should have each and every day.
Love
Jan
No one is alone who had friends.
RLS can definitely be felt anywhere. I think I actually noticed it in my arms before anything, although I don't have any uncomfortable sensations besides the need to move them so I never thought it was actually a thing, just thought it was something weird that my body does. Which it is but it's the same as rls. Only in my legs it developed into crazy sensations and lots of pain. The urge to move part is actually stronger in my arms than in my legs. I don't have it in my arms all the time though like I do in my legs. Strange.
The light of a good character surpasseth the light of the sun