Well, I am beyond frustrated and so sad. I know this is a thread for those experiencing cancer, but I consider you all friends and I really need to vent.
I took Kendall to the neurologist this morning. Over the past month, she had a complete blood workup, another brain MRI, a spinal tap, an EEG and an EMG. We went in, this morning, thinking we'd finally have an answer. Nope! He hasn't a clue what's wrong with her. As far as he is concerned, she has no neurological issues. He has no explanation as to why she has a severe tremor on her right side and can hardly walk. He admits that the majority of her symptoms point to MS, but he won't diagnose it because she does not have the classic lesions and they did not find any evidence of sheath breakdown in her spinal fluid. He also said that he has ruled out Lyme Disease and Wilson's Disease.
It broke my heart when Kendall broke down and begin sobbing in the neurologist's office. I had a really hard time holding it together. For me, this was much worse than when I was diagnosed with cancer. I had an answer and could make informed decisions. She has nothing!
I asked the neurologist where he would suggest we go from here. He suggested we see another rheumatologist. He wrote down fibromyalgia as a diagnosis and said to call him if we ever needed something. Frustrating! She was treated by a rheumatologist for several years for fibro and then told, as her symptoms became severe, that it was neurological.
So, here we are again. No answers. Kendall's symptoms continue to worsen. I will take her to another rheumatologist, but I am also making an appointment at Mayo Clinic in Jacksonville. There are so many auto immune illnesses, but they only seem to test for the obvious ones they see the most. Where is Dr. House when you need him?
Thanks for letting me vent!f