Hi folks~! Been trying to keep up with this post..so a BIG thanks to QUIX and Cherie for keeping this going.

First of all, are you both diagnosed or in limbo??

Since 2004 I have been seeing a MS specialist and his staff,(his PA). The MS neuro bascially ruled everythign out then and told me he'd "treat this as MS" HE then proceeded to walk out the room, so I hurriedly "ran" after him and asked what should I do? He told me to call him if I went numb? Hmmm.. He continues to monitor me and treat my symptoms. He thinks my neuro exams are "good." Hmmm..

I DO have lesions, over 20 lesions, some are periventricular ( and other areas of the brain) for example, but "not typical for MS"

I do have brain atrophy, neg LP, Pos EMG (just recently for CT) Neuro exam is always "good" according to them, even tho I never could do the heel to toe or not fall over, but that HAS improved since seeing my guru of a nutritionist. He likes the work my nutritionist has been doing.

The MS neuro has treated me with oral prednisone 2 times for cognitive problems. THAT is my biggest concern, COGNITIVE/SPEECH, MEMORY problems as that will cause me to lose my job.

I am a drug and alcohol psychotherapist and I told him I have to be able to stand and not sway of fall to the side, AND I need to speak without slurring or stuttering, making incorrect statements. PALEEZ !!!

Otherwise most of my symptoms are sensory, tingling,nunbness (never really going numb) buzzing in my legs almost constantly, electrical shocks of pain down my legs, SPASTICITY FOR YEARS, and now I think that is what is causing my back to "lock up" and spasm so bad that I cannot BREATHE at times.etc.

I have yet another problem that they think is more serious, I see his assosicate who ruled out my brain tremors were NOT seizures. I get intention tremors that wake me up and only happen when I am sleeping or about to fall asleep. AND I get them in my right leg but you cannot SEE them.

The Seizure/narcolepsy neuro I see for this said, I believe that you believe you have these tremors that are not visible to the outside, only inside. He was trying to support me. He's really trying to get me a diagnosis. He thinks I have narcolepsy with cateplexy and now learned I do have sleep apnea.

However, most seriously, I get these autonomic problems, where my blood pressure, heart rate suddenly go up, I become weak and eventually feel as if I will consciousness. Sometimes I just need to rest awhile, but many times I have ended up in the ER or admitted presenting like I had a TIA. Couple that with the inability to walk straight esp on my right side I get admitted.

NOW he's working iwth the possibility I have narcolepsy with cataplexy because even tho I cannot always remain ALERT, or cannot speak, I CAN HEAR.
Odd eh?

One of my Rheumies and myself, think its an autonomic dysfunction. ONe of my last MRI's was suspicious for a lesion on the PONS that was not there before. Could it be possible that its from a lesion on or near the brainstem?? I am going to ask the MS doc.

I see the MS doc next week, and the Narcolepsy neuro tomorrow.

ALL have said its NOT MS then the MS doc told me last year, "I never rule it out." HE's willing to treat my symptoms and wants to monitor me closely becuase of these weird autonomic stuff. HE told me via his nurse over the phone that its NOT autonomic dysfunction..yet MY GUT tells me it is...

I'll ask about my MRI...he'll prob order another. I told him it takes me all year to pay off these bills so he cancelled the MRI last year. He DOES take me seriously.

Would love any input. Anything else I should bring up?
I told my other neuro that the tingling in my face has returned after 4 years, the buzzing and electrical shock pain in my legs is daily and he told me I needed to see the MS doc and he'll order another EMG but this time of my legs

Thanks and take care.. I appreciate you all

Warmly, Jan