I'd love to, but I'm on Medicaid at the moment. I was actually fired for my symptoms (not on paper, but my loss of cognitive ability and memory contributed) in March. No neurologists except the LSU / Tulane system accept Medicaid here, and I need a referral to any doctors in their system. My current doctor is a resident with a impressive background (undergrad: Berkeley, Med school Emory School of Medicine).

She does listen to my concerns and tested me for things that I have asked about. I trust her, but I agree about an MS specialist, or at least a specialist that deals with plaques on the brain. She did the LP very low (probably the L4/L5 area), and I wonder if, since it was in the subcortical area and not in the cortical or periventricular area, would any bands show up that far down when a lesion is active?

Hang in there Pixie. We have all be through this,
in one way or another and are here for you...

As I understand it the L4/L5 area is the normal area for an L/P?

I also had negative results on mine, but that didn't alter the fact that I had MS, there was no better answer.

I agree with the idea that the lumbar area is the area they pull fluid out of the spinal canal-thus the term "lumbar puncture," the correct term for spinal tap.

I hope that you at least get some concrete answers sooner than later...

I know it's a dx of exclusion. And they did find a lesion "suspicious" of being demyelinating. They've ruled out everything except NMO and MG at this point. Hopefully since I was negative on the spinal tap, my chances of developing MS in the next 5 years drops from 50% considerably.

Has MS progressed any in your case? Have you developed any new lesions since? Has your disability increased?

Pixie, I am an older male, and was around 51 when this hit. I lost my ability to walk anything like normally with in a year and a half. I was also diagnosed with Primary Progressive from the start, at least once I found a doctor smart enough to follow the clues? and order the right tests.

My disability has progressed, not a real concern for me because I expected it to just based on my digesting the available info.

My last MRI's were late in 2005, and the specialist and MRI reports noted them as consistent with a clinical history of MS. I had a brain, cervical, and thoracic MRI done at one sitting, all showed evidence.

I really haven't felt a need to have them repeated, like I need some one else to tell me I am brain damaged? LOL

Just a different view on things than most, I never expected to live forever, what happens? happens. I don't spend much time worrying about things that are out of my control.

Well you're definitely a bit of a different case than I am. It's just, the MRI and my history is the only evidence they have of MS. First they said MS (based on presentation), next they said vascular malformation (upon first brain MRI), later they said spinal myelitis, then when they did an MRI on my spine and found nothing, they said... idunno, then they did another brain MRI and found the lesion. They then said Clinically Isolated Syndrome and gave me a 50% chance to develop MS in the next 5 years. Then I see my spinal tap is negative, but there's evidence of auto-immunity with a decrease of IgG over the time I've been there.

Like I said, I just don't know what to think. They're slowly ruling things out, and my symptoms are pretty much gone (except an occasional kick from my leg, some weird sensory thing, or eye lid spasm, or fatigue). Sometimes I think I'm crazy, then I know I'm not because I can't control my reflexes (or lack thereof). I can't help but think, is this MS or is this some strange nonsense that they can't think of?

I know there's no point in worrying, but I'm young and I have a long time to plan my life. I would like to go back to school but if this continues, how am I going to complete anything? I wouldn't want to run up more debt and be sick.

I can deal with it if I know what to expect. If it's cancer, it's cancer. If it's CIS, it's CIS. If it's some aneurysm that is going to burst in 5 years, I can deal with that too. But right now I can't stay out of bed for an entire day, and what am I going to do?