Yes, I saw. And that explains the confusion!

yeah, but I didnt have lesions in the optic nerve. The only ones that they found that they actually called "lesions", were the two they found in my spine. They found spots in my brain, but they just called them "dots" and "spots" and said they werent typical of MS lesions. Apparently those were really small.

That's what I meant, lesions on the brain (along with the ON). That said, you are a special case, Erin, "spots" and all! I am under the impression that with ON, the lesion usually does show up in an orbital study. But yes, even with a lesion on the nerve, that would not be sufficient enough for an MS dx. It was my brain lesions that gave me the fast pass!

The only place they even found lesions on me was in my spine. I didnt have anything on my optic nerve according to the MRI, and just the little dots in my brain.

I guess I got diagnosed by the number of flares, and the optic neuritis and the lesions on the spine.

Yup, spine will do it too! They did find one on my t-spine but that was the last thing I had done and it was post-dx.

Are you having any mobility problems?

How did they dx ON without the inflamation on the MRI? How did they know? Under the criteria they looked at you, seems to me that

1. They found you had ON (HOW?)
2. Time and space
3. 1 lesion on the spine


My Optho/Neuro thinks I've had ON, but my RK surgery makes it hard for him to see the back of my eye. It causes problems with the ability to see all the way back!

I have the time and space for flairs, new symptom.

I have 1 lesion spotted my the Radiologist, and two by the Optho/Neuro


WHAT GIVES???? GRIN!!!!

Maybe it's time for a VEP? Some Dr.s will count that as qualifying criteria and diagnostic for ON.

Or have you already had it done? I somehow don't think so, but sorry if I'm wrong.

Yep, VEP was normal

Just got my LP results (the real one)

It all looks normal...so I can't complain....

No bands

IgG is within normal range

Myelin is fine

Albumin is fine


The bottom line for me is, I can't show it on my tests, therefore, I can't get a dx. What I do know is that I have a lesion now that I did not have before. I have the eye issues, the vertigo and the numbness.

What else can I say?

Bummer

Julie--I would be very happy at being referred to a super-specialist to deal with your eye problem. AND that they are willing to accept your insurance. It sounds like the doctors are really working with you here.

A week may seem like a long time, but in the grand scheme of getting complex problems diagnosed, it's nothing. It's normal to be impatient and want answers as soon as possible, but please give the doctors time to work through their process.

They have the training, knowledge, experience, and perspective to know how best to proceed. They have seen thousands of patients. All we have is the Internet and impatience.

I don't mean that to sound harsh--but I do think that a little knowledge can be a dangerous thing. I see people criticizing doctors because they don't read their own MRIs, because they didn't order this or that test, etc. when there may be very good reasons for the doctors' actions. WE ARE NOT THE EXPERTS.

Of course we need to educate ourselves as much as possible about what's going on with us. And it's perfectly legitimate to ask our doctors about anything we don't understand.

Bad doctors, careless doctors, rude doctors, etc. need to be dumped, of course. But we, on the other hand, need to rein in our natural impatience, worry, and attempts to second-guess doctors. We need to give them a chance to do their work--and then be ready to ask them questions.

As I said, I would be thrilled to be referred to a neuro-ophthalmologist--they are the super-specialists and most likely to properly diagnose and treat you. Because they are rather rare specialists, I'm not surprised you have to travel to see one. Don't be put off by this--it will be worth it.

Good luck!!! and very best wishes in getting your problems figured out.

Nancy T.

Thank you, I have an appt. with the new Neuro-op Tuesday.