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Hi everyone,
Just wanted to update you all on the latest. The EMG (nerve conduction test) was normal, but the Dr. said he this does not change his diagnosis of Spinal Myoclonus. The blood work checking for copper was normal so that pretty much rules out Wilson's Disease. We don't have the urine collection test results yet.
After talking with her Dr. again on Thursday before flying home, I do have a little more information. Her dr. sees 1-2 cases a month of this condition so I feel very confident that we are in the right hands (finally!) I asked him about the over all prognosis of this condition. He told me with therapy, it will be at least 16-18 months before we see significant improvement. The idea of the therapy is for her body to learn to suppress the jerking and the movements and this takes a very long time. BUT it can be done and that's what I have to keep reminding myself and my mom (and my dad, too). The Dr. said she might not ever drive again (I haven't told her this), but that hopefully, she will be able to regain most of her normal everyday functions.
I've found a good rehab dr. in B'ham. Her appt is on Sept. 20. Her Cleveland Clinic dr. will be faxing orders to the rehab dr.
Now, as far as what to tell people when they ask about her condition. Joy brought this up to me today so thought I would address that here. I've been very leery of what I put on FB and I'm sure you all understand. I think it is fine to tell them it's Spinal Myoclonus or just that the staph infection caused lesions on her spinal cord or that it's a spinal cord prob caused by the staph infection that causes uncontrollable jerking and abnormal movements. It's very, very rare. There's no real cure. It's managed by drugs and rehab. The symptoms are made worse by fatigue and emotional stress. When she gets hot, her symptoms seem to skyrocket.
Mom's condition makes for some really long days for her and for dad so please keep them in your prayers. She is easily fatigued and can only walk a few feet without resting. She is only without the jerking when she lies down for a period of time. The jerking keeps her from most of her daily living activities so you can imagine how hard this has been and will continue to be for at least the next 16-18 months. I just hope she can make small improvements along the way to keep her motivation and spirits up. We all need to see improvements being made, even if they are small. It's been an emotional roller coaster for us all.
She has an appt with her Tusc neuro next Thurs. and I will be pointing out the areas of concern on her upper spinal cord. Hopefully, the neurosurgeon there (he's the one who did her spine surgery when she had staph) will be able to look at the scans and give us his opinion. If there is any possibility her spinal cord is being compressed in the neck area, I am hoping he will want to address it.
We really appreciate your prayers and your support. It means so very much.
Love you all,
Kim
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