So I have decided to talk about why I haven't been around much, after all, it is Rare Disease Day and I would like people to understand. I have been diagnosed with atlantoaxial, cranio-cervical and sub-axial instability .In other words my neck is very unstable due to my Ehlers-Danlos Syndrome and I am having trouble holding up my head (all those brains ha!)
In order to be diagnosed I had to travel to London to have an upright MRI, then to Barcelona to speak to a neurosurgeon, and I had to pay for all of that out of my savings. The Spanish neurosurgeons do not acknowledge that what I have exists, the last one told me that all my symptoms were caused by the fact that I am too skinny ha! Well perhaps we should examine that premise?
When I look down or to the right or left I feel a disconnect in my spinal cord. I can't feel my legs, I can't control my knees. I have constant shooting pains and numbness in my arms and I can't control my hands properly. My upper and lower back feel weak and wobbly. My head hurts constantly, I have tinnitus that is so loud I can no longer hear anything on the phone. I walk with a stick (when I am not pushing Jim, my husband, in his wheelchair) because I am so unsteady on my feet and I can't afford to fall, as I have to take care of Jim. The nerve pain is the worst though, my legs burn, my arms burn and well the pain in my neck is indescribable. I could go on and on, there are many more symptoms.
And do I 'look' normal, well apart from when I am wearing my neck collar to ride on public transport (I can't drive anymore obviously as I can't turn my head with my neck collar on), yes I do (well normal for me ). I am so sick of Doctors that treat me with disdain, contempt, indifference...................why are we so strong, because we have to be, to get the care we need. It took 43 years for me to get my Ehlers-Danlos diagnosis.
My wish today on Rare Disease Day is that Doctors remember their hippocratic oath, that they drop their complacency and pick up a book or do some research on the Internet to learn more and show a willingness to treat us, because I need a total neck fusion and I don't have the 71,000 euros it will cost.