I can really feel for you too. Many of the young people that I used to work with had myoclonic jerks. I never really gave it much thought. Now i realise just how uncomfortable it is, especially when all you want to do is relax. Having your body do things that you have no control over is most disconcerting. I can be lying down sometimes, get muscle spasms, and literal sit up! The clonazepam doesn't take the jerking completely, but it does help. Paul
I still do not have a diagnosis. I have had 2 MRIs,1 EEG,a EEG and EMG combined,2 lumbar punctures,chest X-ray, and numerous blood tests. I do have problems with my eyes, flickering and muscle twitches. I am waiting for the results of the some tests I've had. I am now also looking at the possibility of whether I have Lyme disease. I do pray that you will get some answers to your condition soon. Paul
It must have been amazing to be able to walk easily after such difficulty How disappointing to disappear again. ME is like this so hard to deal with the hopes and disappointments like an unpredictable roller coaster. My heart goes out to you especially hearing about your job it must be hard to let go of this . God Bless you -I believe that everything can be used in some profound way to bring goodness into the world no matter how bleak or sad things may seem at times. love Linda
I feel you have an inner strength to have made this video - I am really sorry about your job - so many of us with ME seem to have been in the caring professions and had so much to offer. It just makes me more angry about the dreadful stereotyping that's been put out over the years.
Thanks for sharing your story it is very interesting and very disconcerting . I was wondering if you have heard of dopamine agonists like requip or mirapex (U.S. tradenames) that are used for movement disorders and wheter this is something you could try for your symptoms. Take care, The V person
Hi Joss,I really feel for you. It must be very hard to bear as another year passes without seeing any improvement in your condition. Grief can be such a hard part of the lives of those that suffer with a chronic condition. The lack of recognition that M.E. suffers get only compounds it. I don't know whether this will mean anything to you, and I don't want to sound patronising. I want you to know that you are very much in my prayers. Best Wishes, Paul
Hi! i live in argentina and my mom diagnostic is spinal myoclonus. she was in the hospital for 2 days and had a lumbar puncture and all kind of studies about what she have. The diagnostic is Propio Spinal Myoclonus and she has ato take clonazepan. she was with mioclonias for 17 hours non stop. if you can share with me your experience i will be very grateful with you so i can help my mother. do you know if theres is a center in usa that is the best to care this illness? thank you.
I can really feel for you too. Many of the young people that I used to work with had myoclonic jerks. I never really gave it much thought. Now i realise just how uncomfortable it is, especially when all you want to do is relax. Having your body do things that you have no control over is most disconcerting. I can be lying down sometimes, get muscle spasms, and literal sit up! The clonazepam doesn't take the jerking completely, but it does help. Paul
I still do not have a diagnosis. I have had 2 MRIs,1 EEG,a EEG and EMG combined,2 lumbar punctures,chest X-ray, and numerous blood tests. I do have problems with my eyes, flickering and muscle twitches. I am waiting for the results of the some tests I've had. I am now also looking at the possibility of whether I have Lyme disease. I do pray that you will get some answers to your condition soon. Paul
It must have been amazing to be able to walk easily after such difficulty How disappointing to disappear again. ME is like this so hard to deal with the hopes and disappointments like an unpredictable roller coaster. My heart goes out to you especially hearing about your job it must be hard to let go of this .
God Bless you -I believe that everything can be used in some profound way to bring goodness into the world no matter how bleak or sad things may seem at times.
love Linda
I feel you have an inner strength to have made this video - I am really sorry about your job - so many of us with ME seem to have been in the caring professions and had so much to offer. It just makes me more angry about the dreadful stereotyping that's been put out over the years.
Thanks for sharing your story it is very interesting and very disconcerting .
I was wondering if you have heard of dopamine agonists like requip or mirapex (U.S. tradenames)
that are used for movement disorders and wheter this is something you could try for your symptoms.
Take care,
The V person
Hi Joss,I really feel for you. It must be very hard to bear as another year passes without seeing any improvement in your condition. Grief can be such a hard part of the lives of those that suffer with a chronic condition. The lack of recognition that M.E. suffers get only compounds it. I don't know whether this will mean anything to you, and I don't want to sound patronising. I want you to know that you are very much in my prayers.
Best Wishes,
Paul
Hi! i live in argentina and my mom diagnostic is spinal myoclonus. she was in the hospital for 2 days and had a lumbar puncture and all kind of studies about what she have. The diagnostic is Propio Spinal Myoclonus and she has ato take clonazepan. she was with mioclonias for 17 hours non stop. if you can share with me your experience i will be very grateful with you so i can help my mother. do you know if theres is a center in usa that is the best to care this illness? thank you.