Thursday, November 1, 2012

Where We Go From Here: An MS Update

When I stepped into the doctor's office Tuesday afternoon, I was excited and nervous. It had been 6 months since my last check-up. Since that visit, we started a Paleo lifestyle (because my doctor mentioned it at the last visit), I stopped breastfeeding, and I had an MRI done with and without contrast dye. There had been lots of changes.

I did the typical routine after I checked-in. I walked as fast as I could down a hallway (which happened to the fastest of all the patients all day), tried reading the eye chart (at least I could see the outline of the chart this time with my bad eye), and got all of my vitals taken (all normal). Then it was time to see Dr. M. I have to admit, I was really excited to tell him about the changes we had made.

When he asked how I was feeling, I told him better than ever. Then I filled him in on all the details of what we were doing, what we weren't doing anymore, how I was running now, etc. I'm sure I caught him way off guard. His reply to what I thought was wonderful news was "that's really hard to do, isn't it?" I told him it wasn't easy but that we thought it was worth it. 

Then he moved on.

Apparently, it was somehow my job to let him know that I had an MRI completed, even though it was scheduled through his nurses, because he had not even looked at it. He took less than a minute to breeze through it, and told me I had active lesions at the time of the MRI, which was done back in August. So really we learned very little about the MRI and then he started in on the medication.

He mentioned there was a new oral drug that just came out in September that was supposed to be a lot better than the other oral drug on the market because it came with fewer side effects. He didn't mention the odds for flare-ups on it, the benefits of taking it, just what the potential side effects were.

That's when I said it..."I'm not sure I want to take any medication right now."

He obviously didn't like where I was going with the conversation. You see he is a medicine man. He will always push for the medication. But I'm not so sure medication is always the answer or the only answer. I did ask if I could have my vitamin levels checked and he gladly accepted. I actually went across the hall and had a blood test done that same day (everything they tested for came back in the normal range). He also recommended I have another MRI done when I come for my next 6 month visit. I'm fine with that. In fact I think that would be wonderful.

Maybe we went into the appointment ill-prepared. Maybe we should have asked more questions. All I know is we left feeling confused and a little down.

So where do we go from here? I'm not exactly sure, but I do know it will involve a second opinion from a more holistic doctor. I am not convinced yet that there aren't other more natural things I could be doing to help manage this disease. By all means, I don't want to seem negligent about my health. If medicine seems to be the best option, then I will do it, but I want to know all of my options first.

According to the literature online, this new drug that Dr. M is recommending only has a 30% chance of preventing a flair-up and there are no guarantees it could prevent a flair-up at all. That's not very good odds in my opinion especially since the side effects from this medicine, as well as several other possible choices, could make me feel terrible (think flu-like symptoms for who knows how long). I think it's quite possible that my diet changes alone could give me those odds. It also scares me to take a drug that is so new. What are the long term effects? It already has a chance of severely affecting your liver and that's known only from short term studies. So that's where we stand right now and I will let everyone know how things progress.

I appreciate all the thoughts, messages, and prayers from everyone that has been on this journey with us. They mean the world to us.

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