(i am sorry this is so long, but i don't know where else to turn right now. i am so upset. )

in the first week of january 2009, i had a sudden onset of a twinge at the base of my skull on the left side, became a bit lightheaded and developed a sub-occipital headache which persisted for about 10 days. during that time, i had a number of neurological symptoms present such as eyelid twitching, random finger and other muscle twitches, scalp tingling, nausea and visual disturbances, but no neck pain. i also just felt ill and had muscle weakness in my legs and arms. one day felt that my legs could not support me--like they were going to give out, but didn't.

a couple of weeks later, my eyes started to feel like they were burning. i looked in the mirror and saw that both of my pupils were dilating and contracting in a kind of pulsating fashion. after numerous visits to my GP who insisted it was a virus or anxiety and sent me home with valium, i self-referred to an ophtho-neurologist who examined me and my eyes and said although he noticed the unusual dilation pattern, everything looked perfectly normal and my vision was exceptional. he suggested i see a neurologist.

i finally got in to see a neurologist who ordered brain and c-spine MRIs in early march. the brain scan was clean, but the MRI revealed cervical spondylosis and myelopathy--specifically there are bulges at c3-4 and c4-5 and a herniation at c5-6 that is pressing 2.5mm into my spinal cord. i also had an MRA and transcranial doppler to check the cranial vascular system with normal results. the neurologist indicated PT would help and sent me on my way. i went through a few months of PT which seemed to help with the spasms in my head, but my insurance cut me off after 20 visits. subsequent visits with a couple of different neurosurgeons have put me on track to have a discectomy to remove the herniated disc and minimize the risk of paralysis from the spinal cord compression.

my eyes calmed down, but many of my other symptoms have persisted, with some days being better than others. a month ago, i once again got the same headache i had in january and began feeling generally unwell like i did in january. i also noticed some urgency with my bladder and my eyes started acting up again, along with some electric shock like sensations along my torso. i had gone to see my neurosurgeon to discuss schedule a discectomy, and told him what was going on. he said "that's not from your neck, and i suggest you visit your neurologist again to see what's going on." i asked the neurologist about MS and he said with a clean brain MRI, it was highly unlikely. even so, he ordered a visual evoked potentials test which i had last week and my results were normal. he said this removes MS from his radar and is convinced i'm having an atypical response to the spinal cord compression.

yesterday, i looked in the mirror after my eyes felt like they were burning again, and my pupils were both completely dilated to the edge of my iris in ambient light. i freaked out. i am supposed to be scheduling my discectomy for the first week of december, but now i just don't know what to do.

these neuro symptoms just don't seem to add up to a c-spine injury and i'm afraid of having major neck surgery that will leave me vulnerable to more surgeries in the future if i really have MS. i called the local research university's MS clinic, but they won't see me without a thoracic MRI which none of my doctors will order because of my clear brain and c-spine MRIs, and now normal VEP results.

does this all sound like MS to those of you with a diagnosis?

thank you in advance for any thoughts you may be willing to share.