Sorry, my primary care doctor ordered the MRI - with and without contrast.

I'll be going for a 2nd MRI in January which will be ordered by the neuro.

I wish I could get to a MS specialist but the insurance I have does not allow me to go wherever I choose

Maybe a referral from your PC or Neuro to a specialist would help? I know my insurance insists on a referral before approving anything.

Welcome to NT!

There are many people who are in limboland. I am sorry you are now in limboland.

The criteria for diagnosis has changed and recently many doctors are being more careful in diagnosing MS. They have found that people have be diagnosed with MS, started medication and later on it was discovered that they don't have MS but something else. Someone on the board posted an article about it and it was true. I have been diagnosed for 10 years, took medication for MS, and now my new neuro isn't 100% sure that I actually have MS. I do have the lesions and several of them are in the right spot and I have clinical symptoms but I have not had any new lesions in a number of years. He explained to me about people being diagnosed with MS and finding they don't really have it. He is a nationally known MS specialist and has trained many MS specialists so I do trust his opinion. For now, he is keeping the MS diagnosis just in case and I follow up with him every few months with yearly MRIs.

Keep track of your symptoms (date, how long they lasted, what they were, etc.) so that you can bring it to your next appointment. Obviously, if something major happens definitely call your neuro.

Keep us posted on how you are doing and if you have any questions. You will find the people here very knowledgeable and helpful!

hello & welcome to NT,

i agree with the other's advice.

you could wait to have the 2nd MRI to see what that shows, then get a 2nd opinion. or, you could get a 2nd opinion now.

if you call your local MS society at 1-800-FIGHT MS they can direct you.
make sure you get copies of the MRI & test results. get a copy of the MRI disc.
all this is to make sure you can bring records to anyone else you see. and, it's a good idea to start a medical file on yourself. you will find that very helpful.

best of luck.

A second opinion is certainly a good idea. However, though your neurologist said that if o-bands were present then you would likely get the dx, but it's a number's game with the o-bands where if I remember correctly it has to be greater than 5 present and then of course there's the ratio on the albumin and igg. That is the portion that he may have felt was more indicative of MS over the o-bands where the presence isn't great enough for a dx even if the lesions.

And it is crappy being in the limbo land. I spent 10 years there as have a lot of folks, it's just a really tricky disease that has no set symptoms or even progression chart that you can follow, and it's not the only disease out there like that making it even more fun for our doctors to decide which tricky one you may have since I assume they've looked at all the easily testable/viewable ones. Now you're into the void where it feels like doctors are just spinning a wheel and tossing darts at it to guess the next possible dx.

But as has already been suggested, keep track of your symptoms, don't hesitate to contact your neuro if any new symptoms arise, and pretty much be the squeaky wheel as much as you can. Don't insist you have a particular dx, but force the doctors to give you a proper dx, and just be ready for a potential long haul while praying that the next test holds the answer.

We're all here for you no matter what your dx ends up being or how long it may take to come in.

hey starz. i was dx'd in '03 & was told then that 2 or over on O-bands was diagnostic of MS. has that changed?

is the McDonald Criteria still done or has that been changed?

Neither of my neuros followed the McDonald criteria... But my when I got my LP done the test did say equal to or greater than 5 o-bands was what they considered positive.