6 Month MRI Results

[Just a small town girl]

So I guess my expectations were probably a little unrealistic. I have at least a few lesions that are definitely new. I'll know more after I see my neuro next week to follow-up.

"There are a few T2-weighted lesions in the posterior fossa. [These are definitely new since my last MRI.] There are a few scattered foci of increased T2 signal in the deep periventricular regions, and involving the body of the corpus callosum. [These may be old.]"

I'll post the neuro's interpretation of what's going on after my appointment.

Thanks to everyone for giving me a space where I can share what's going on with me and also just have some place where people just understand the disappointment that can come with the radiologist's report.

[CrazyCatLady]

Oh I feel for you!!! My 6 month is mid June, I just saw my neuro this past Monday and he told me he wants to wait on the 6 month MRI. He said most of his other patients that have had the 6 month MRI have all had new lesions. He told me that there isn't a clinical reason to do the MRI so why not wait a bit. I am not sure how to feel about it so I told him I would think it over and decide what I want.

I can totally understand your disappointment with the MRI results. I feel like this new drug should be so great that we are Healed from it. Fat chance. It makes me want to go kick rocks but...my balance is so bad the past few days I might fall over. LOL! OK I had to laugh at myself there. Have to keep up the humor here.

[Downtown girl]

Don't lose hope!

So sorry to hear. As I look forward to starting the treatment, I also want to believe it is a miracle drug that will freeze the disease. Please keep us posted.

[miketurk]

MRI What is really important anyway?

Sorry to hear you are upset by the findings.

We have the wierdest of diseases.

In Australia if you die with MS (or Parkinsons or Alzheimers for that matter) you are automatically autoposied. They figure you should to help the science improve after they spend a lot of money on your care. Now look this up on the internet if you find the following hard to believe. They found NO relationship between how many MRI lesions you have and how well you were functioning prior to your death. You could have lots of lesions and still walk, talk, and think better than someone else who had fewer lesions. Told my neuro about this years ago. At first she laughed at me and I demanded she read up on it. Next appointment, six months later, she agreed with me.

Even the MS society has recently changed their description of the importance of brain lesions on MRI. They now say ONLY that there is a relationship between having an increased number of lesions and developing progressive forms of MS.

Thus the important fact is to live each moment and each day to the fullest. Don't look to some number on some test as a way to determine you are better or worse. Suggestion, ask the youngest person in your family, a young child, how they think you are doing. They will be honest. Carpe Diem!

[Justsayyes]

Agree with the poster above that number of lesions doesn't always correlate with symptoms. At somewhere around 2 years into my MS journey, I had an MRI that showed a new lesion on the brainstem, the largest one yet. It was more important to my neuro that it was not enhancing or active.

I also had numerous new little spots that were determined to be typical for someone with MS. The new lesions scared the heck out of me, but I've done really well in spite of it!

Let us know how your appointment goes.

[MSRSX]

I am hoping to go a full year on the Gilenya before getting a new MRI - I don't know that 6 months is really enough time for it to take full effect. At least that's what I like to tell myself

My last MRI I had new lesions after a year on Copaxone, I was so disappointed, it really brought my mood down severely for daaaays. Then I decided to go by how I feel. Thats easy to say without a "bad" MRI report in front of me of course... I hope you take the time to do something nice for yourself, this is stressful!

[Just a small town girl]

You guys rock!!

Thanks everyone!! This is why I love this forum! So many great people with such good advice. I'm still such a newbie at all of this that even if I'd been on a CRAB drug and had new lesions I probably would have taken it hard.

I can't say just how much all the support, thoughts and advice means.

I'll post again after my neuro appointment next week to see what she says.

Thanks again for all of that. I needed a good cheering up / kick in the pants and you guys (and gals) delivered.