Originally Posted by Topsie

HI I had botox shots in the palate of my mouth for my palatal myoclonus. They are very painful and dangerous because that is right near your swallowing muscle etc. One time out of four was helpful. The other times resulting in massive ear popping- aggrevated my myoclonus. If you can find an accupuncturist who is very well studied in the authentic Chinese ways of accupunture- perferably someone directly from China who has studied many years there- then accupuncture has been helpful to me for both my palatal myoclonus and my spinal myoclonus. I went to one accupuncturist who did not really know the body connections and after those accupuncture sessions the ear popping was absolutely horrible- 72 pops per minute in each ear for 2 straight weeks. However, I have just started going 2 times a week to an amazing accupuncturist who taught and studied accupuncture for 37 years in China and he has been very, very helpful. So study who you go to and try accupuncture NOT botox. Good luck. Topsie

Originally Posted by walker604

Buttons,
Thanks for your response, and good to hear from you. The shots are botox injections, and yes it looks like it is for a study. The doctor she used to see in Houston that was the quack we talked about before had even suggested that like more than 2 years ago. She currently has not been seeing a doctor for it due to the fact that none have done anything to help or seem to care. Regarding the cost I don't think there is supposed to be, but not sure until I get a chance to talk to them to see if she qualifies as they put it. I have talked with her about it, and she says she is up for it knowing the uncertanties. Take care.

Originally Posted by taluma

After suffering a bad fall in April 2011 I kept complaining of a pinching feeling and loss of leg function. Although S1J's were identified as part of the issue, no one could tell me what it was. I was in alot of pain and nothing was helping with the inflammation.
On October 28 I had cortisone injections to both sides of my tail bone. It felt like they had hit a nerve but this was not the case. Within one week I was having violent jerking movements to my right side, mainly arm, torso and neck. The main base of the pain coming from the buttock area. Again, no one could make any sense of it and I was made to feel by one specialist that I was making it up.
I was put on large doses of morphine to combat the pain. It took 3 months to get in with a Neuro. It took him 5 minutes to identify spinal myoclonus as a direct result of the trauma from the fall. The cortisone was the catalyst, sending the nerves into complete hyperdrive.
He advised that all the codiene based meds I was taking were making the symptoms worse.
For two weeks now I have been morphine free and am on Clonozapam to control the tremors. The medication makes me very dopey and so far the jerking has been worse than ever lasting up to an hour. I am tired.
The neuro assures me that this will go away in time but cannot tell me how long. I am worried about being on these meds long term and am reading alot of stories of people who never really recover.
I feel really alone in this and it is made harder by peoples stares. My kids say I look like one of the Thunderbirds puppets!