"I have spinal myoclonus and palatal myoclonus. I have had the spinal m. for 3 years and that palatal m. for 6/7 years. I have tried everything and been on different meds. I am so frustrated and feel so alone in this condition. I really w..."
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About Me: Female, 50, CA, member since Dec 2010
I am in my 30s and have spinal myoclonus and palatal myoclonus. I have had these conditions for 7 years.
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Dec 21, 2010
"I have spinal myoclonus myself! Wow I felt so totally alone in this horrible condition. I have to go to accupuncture for it now so will write more very soon. Feel free to email me as well. I was told only 1 in 3 million people have this ..."
Dec 21, 2010
"I understand completely. Try Chinese accupuncture. I go 2 xs a week. It helped at first but now nothing helps. I still go because I am desparate. Good luck. "
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01/11
You deserve a big bear hug!
Hi Lauren,
People don't understand how myoclonus works, even my husband will say get up and walk around that will stop it, but I know that the minute I sit down again it comes back. Family who say its stress have no idea what they are saying, yes stress can make you worse but that is NOT the cause of myoclonus. You have my sympathies.
Hugs
Suz
01/11
Just a quick note to say hi!
I've added you to the group Lauren.
As far as coping in public, I must admit I don't go out much but when I do I HATE it, you know people are watching, although after 4 years I'm getting to the point that I just don't care anymore. I think its because I need to accept I'm stuck with this and that is the only way I can cope. We went out for a drink Xmas eve lunchtime and an older couple asked me if I had MS, I walk with a stick and I was actually relieved that the lady mentioned it and I could explain, I felt alot more comfortable after that.
I am in the UK so the Mayo Clinic is not an option for me unfortunately.
Look forward to getting to know you better on facebook.
Suz
01/11
Just a quick note to say hi!
Thanks for the New Year wishes, let's hope 2011 brings us some answers to our jerks!!!
I'll be on facebook in a bit so I will look out for you.
Take care
Suz
12/10
Just a quick note to say hi!
Thanks for the note, I feel for you spinal myoclonus is bad enough, but I think palatal must be dreadful. I have a group on facebook if you are interested in joining, just look up spinal myoclonus and you will find it.
I have made a couple of other friends due to this condition and they are in the group too. The more the merrier.
All the best
Suz
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