Els-Please read

It started with headaches. The headaches were on and off. Mostly on my left temple. They were dull, aching. Not as painful as a migraine. Then I started developing these sparkly, firefly looking things in my vision. Both eyes. They move around fast and are silvery/white. 24/7. I only really notice them against plain backrounds like the sky or a wall. So the headaches on and off. But the vision all day.

Then there were times during the day where I would get lightheaded and dizzy. Almost like a sinking feeling or tilting sensation.  I told my doctor and she did a mri, cat scan and eeg. Mri and cat scan normal but eeg abnormal. I've seen lots of neurologists, and even an epileptologist who say abnormal eeg, but nonspecific, not seizure disorder. One neurologist tried me on Lamictal (anti-seizure) but it made me feel worse. They took me off and I began devoloping this Palinopsia (afterimages and trails) For example, I look at something, look away, and its stuck in my eye. Or someone walks but and I get a trail, like a ghostly image. Mostly seen in the dark and something light goes by. This is worse at night, especially when I am driving. If I sit at a red light and move my eyes up and down I get a trail of the red light.

I went back to my doctor who said this was migraine aura and sometimes seen in patients with a hole in the heart. So they did the echo and bubble study which showed evidence of a hole. I am still waiting to hear if this is whats causing all of my problems. Through all of this, alot of doctors say that I describe visual phenomena seen in ms patients. When you say mri of spine. Is that like a spinal tap? I've never had numbness/tingling. do you have any ideas? I understand that your not a doctor but I would appreciate your thoughts!

Nope, no MRI I have a pacemaker for bradycardia which this diease has caused.  There isnt any one specific test to say you have this just a bunch of tests to rule it in.  I had to see a special neurologist called a Movement Disorder Specialist who did a bunch of blood work, had MRI's from before my pacer (I do have MS and have had MRI done many times prior) and a tilt table test which is a nasty test but for those of us who have unstable blood pressure problems this test picks it up.  I do know they can do PET Scans but I wasnt able to do that one either.  The MSA lowered my heart rate and blood pressure to drastic levels.  It's pretty wierd.