Balance Problems. Spinal birthmark, and age 30
My main problem is walking and falling caused because my muscles are very weak and not getting stronger. But I also have a port wine stain on my back, my left back, and all over my left arm.
I just turned 30 and live just outside New York City. I orginally saw a doctor for back pain about 6 months ago. They thought the cause was I was not walking right, due to weak muscles, which also causes my problems with balance. I started physcial therapy, but my muscles are not getting stronger. I saw neurologists, neuromuscular specialists, and a mitochondrial specialist. They have run MRIs on my head, EEGs, EMGs, and even a muscle biopsy surgery, but cannot figure out what is wrong. They have ruled out ALS, MS, muscular dystrophy, and a number of myopathies. I now walk with crutches and they have recommended I get a power wheelchair.
At my last visit, the doctor pointed to my port wine stain and said he thought it had something to do with it. That doctor had never seen my back. Then I found this website, and specifically the part about spinal vascular lesions and starting with walking and falling problems. I do have port wine stain on my spine - about a 3" x 3" spot near the top of my back. We found a paper by Wang and Xu on medical imaging of Cobb syndrome and my back looks a lot like the picture in that article, but higher. My symptoms are consistent too.
I sent this to my doctor last night, but he's a mitochondrial neurologist, not a port wine stain specialist. From this website I saw a radiologists in New York City and a dermatologist in New Jersey, but not sure who I should contact. Any help would be appreciated. I just want to be able to walk normal again, though since it's been going on for a long time, I realize those nerves may be permanently gone.