Since all this weakness started in March I’ve been tested for just about everything you can think of. I’ve been tested for Myasthenia Gravis, Hemochromatosis; Lyme Disease; Thyroid problems, including an Ultrasound of my thyroid; had a Liver Ultrasound and a Biopsy; and had an Echo-cardiogram, an ABI to test for circulation in my legs, and a Nuclear Stress Test. All these tests came back with a clean bill of health.
We are very thankful that so many of the really scary possibilities have been eliminated.
But I’m not through with the testing yet, as my liver enzymes continue to be high, and the Creatine Kinase test I’ve had twice now shows elevated MB enzymes. That’s why I had a complete cardiac workup. I have read online that neuromuscular disorders can cause high MB results, not just damaged heart muscle, but my Cardiologist wanted to rule out any heart involvement.
I told the Cardiologist I really didn’t think it was my heart, but I’ll admit that hubby and I were both very relieved when the results came back OK yesterday.
So now I wait for my October appointment with the Neuromuscular super specialist at UAB. We’re busy collecting all the test results and CD’s from the various tests I’ve had over the last few months.And I’ve been keeping a diary, too. These specialists are very difficult to get to see, and I want to be sure the appointment is as productive as possible.
I still don’t walk very well, and I tire out very easily, but the Essential Myoclonus continues to be basically nonexistent. So we’re praying that the UAB specialist will be able to pinpoint the problem and help us deal with it.