I have a friend in a similar situation as you Gazelle. She was dx about 4 yrs ago, after a couple of attacks and a MRI, and was immediately put on one of the CRABs. She wasn’t feeling comfortable with just the one opinion though, so she sought another. While I agree that EVERYONE (dx or not) should get a second opinion, I warned her that based on what she told me about her MRI results, it was possible she could end up losing the dx at that point.

As it was, the second neuro disagreed that it was MS, and he revoked the dx.

If my friend had stayed with the one opinion, she would be on treatment right now. Even though she has had “flares”, her MRI’s have ‘looked so good’ since the initial dx. Her med would likely have been credited with keeping those big bad lesions in line, at least for a few more years . . .

There is probably little doubt that a % of us, especially those who only get one opinion, get a “premature” dx of MS. What I mean by premature is that the person may prove to have MS in the long run, but someone jumped the gun and got lucky with giving the right dx from the get-go.

There are times too though, where people have been using a CRAB and staying stable for 5+ yrs, till eventually a 2nd neuro comes along and says “it’s not MS”. Most times when this happens, it’s because they finally figure out that it was another disease all together . . . and some neuro had jumped the gun in the beginning.

In your case, Dr Flip-flop was flip-flopping for a reason. He must have felt that he didn’t have clear enough evidence of MS at that point, even if he believed it would pan out to be MS in the longer run. Your second neuro agreed there wasn’t enough evidence YET, but that doesn’t mean either believed there wouldn’t be in due time.

At this point, I hope that your MRI has changed, this neuro sees something the others missed, or he is at least prepared to monitor you in the longer run. It is important to find one neuro you trust, and stick with him so he can follow your progress (even if you forget the "details" on attacks, he WILL remember).

Good luck!

Cherie