Second opinion?

[mykidsmom]

In 2008 I was diagnosed with CIS and put on Copaxone. I had some lymph node abnormality and in 2010 and was sent to Mayo Clinic for a second opinion. While there they told me I should not have been put on the meds so soon and took me off of Copaxone. I have just had another MRI and have 2 new lesions. I have had been seeing some physical symptoms now as well. My doc wants me to go back on the Copaxone. Should I get a second opinion? I'm confused and scared and don't know where to go from here. Can anyone help me decide what to do?

[quotefanatic]

Hello,

I would probably suggest a second opinion, better to be safe than sorry. Though, the decision is up to you. Sorry for the lack of advice!

Best wishes to you!

[Thinkimjob]

The Mayo Clinic is about as good as it gets, I'd say.

[Redwings]

Hi mom:

The appearance of new lesions and symptoms changes how your condition fits the part of MS diagnostic criteria called dissemination in time and dissemination in space. That's what can change CIS to definite MS. And that's the likely rationale for why your neuro wants you to go back on Copaxone.

If you have any doubts at all, it's worthwhile to get a second opinion. In the meantime, google the McDonald diagnostic criteria for MS, 2010 revision. One of the reasons you're confused and scared is that you don't have enough information to make decisions with. Knowledge of the diagnostic criteria and how they apply to you will help you to better understand the reasoning behind your doctors' assessments and recommendations.

[mykidsmom]

Thank you for your responses! It's nice to have a place to go where people understand. I really appreciate your help

[KatieDidNOT]

I agree with both Thinkimjob and Redwings.

Mayo is about as good as you can get, but even at Mayo each doc will have a different opinion.

I have said this in several of my posts and people are probably tired of reading it and some would even disagree. Don't do anything that you would regret in 10 years. Seriously, ask yourself "if I do this will I or will I not regret it?"

When I first started my MS Journey, I had one lesion...yep only one. That was a little over 10 years ago and almost no disability. One could say I had CIS (at that time they were calling it "benign"). That is my opinion, terms keep changing over time.

Fast forward a few years, I had 4 lesions, and although that does not seem like a lot (and it isn't), it is the location of the lesions that is important. One of those lesions is what is causing the majority of my problems now.

My neuro said O.K. time to go on a DMD now! I said no. Boy...I regret that to this day. Was back in his office a few months later, that one lesion had grown and boy I was going down-hill from there. I went on a DMD immediately.

We all know DMDs are not a cure. They only have a certain efficiency rate, but they can possibly slow down the progression and sometimes if you are lucky shrink the lesions. That is what your local neuro is doing...trying to slow down the progression. And from what I understand, a large percentage of neuros are prescribing DMDs to people with CIS to ward off a final diagnosis of MS.

As much as I would like to say go with Mayo's advice, this is one time that I would be inclined to agree with your local neuro. But it is your body and you need to do what you think is best, and everyone's course of the disease is different.

I recently had to change DMDs...start Copaxone on Saturday...so I am right there with ya!

Cheers--Katie

[foxz71]

When it comes to your health; always get a second opinion and if those two opinions disagree; go for a third. Whether we want to admit it or not; doctors have off days, make mistakes and sometimes get distracted. It happens. It's important that you stay in charge of your healthcare and you decide who will be a part of your healthcare team that will help you make the best choices by providing you with as much information as possible on terms you understand. Don't settle for less. Those doctors work for you.

[Toomnyhats]

Redwings is right, your condition has changed. That makes today a different game.

Mayo's opinion was for how you were yesterday, not today. Don't be surprised if you went back to the same doc at Mayo now if he agreed with your local neuro.

If you are not comfortable following your local neuro's advice, then, yes, get a 2nd opinion.