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!