Tuesday, April 22, 2008

Sometimes "Going with the Flow" is not Easy

I met with my MS-NP (nurse practitioner) yesterday.

For those who are new to Brass and Ivory, I finally acknowledged in early March that I was experiencing an honest-to-goodness MS relapse. I didn't even get to leave the Neurology Center from that appointment in March without signing-up for five days of IVSM (Solumedrol) in the Infusion Center.

On Day 5 of the IVSM, I was ecstatic to be able to stand-up out of a chair or the couch without struggling or pulling on the coffee table. Yeah!!! My legs had decided to work again. Standing up is such a glorious accomplishment at times.

Meanwhile, my body started feeling loose and free...much less spasticity...how very nice that was. Improvement continued during the 10-day steriod taper and beyond. I even regained most of my sense of balance.

About two weeks ago, only 1 month since the IVSM, I started to find climbing the stairs becoming difficult again. Then a rubber band settled around my right knee, followed by the hamstrings and calves which stayed tight and rigid, impervious to stretching or massage. Soon I found standing up to be strained again.

If any of you have sensed a bit of dissatisfaction around here lately, now you know more of the story. To be honest, I haven't been entirely pleasant to be around in real life either.

Last Monday, I expertly surfed the Magnetic Tube without a single wipe-out. Beforehand I predicted that lights might glow, but this time no enhancement occurred with the gadolinium. Perhaps that could be explained with my having waited five weeks after the IVSM treatment to get the MRI.

However my inner voice is rarely wrong and it insisted that something was amiss in that brain/neck of mine. And wouldn't ya know, that voice was correct.

Just check out this image.

What do you see? Really?!!

That's what I said too.

Guess what? We're right....

That's a non-enhancing, demyelinated lesion which spans from C4 to C6 and measuring about three centimeters. Previous lesions spotted in this area a few years ago were measured in millimeters.

The MS Nurse mentioned that, although there are a few spots in the brain, no change is apparent since the last MRIs taken in 2006. And that the brain lesions are so small that someone might only detect them if he were looking very closely and specifically for MS-related lesions.

Then we discussed my continuing relapse symptoms, the difficulties resulting from said relapse, and the frustration I'm having with the spasticity in my legs. We discussed another round of steroids, although only 3 days this time and without an oral taper.

She wanted me to start immediately, but I'm going on a trip with my Sweetie this Thursday and returning next Monday. We're headed to Florida to attend a wedding and enjoy a mini-vacation. No...I don't think steroids this week is a great idea. So I'll do it next week.

[Sidenote to my Sweetie who often reads the babbling I write here: Remember our discussion about engagements? I really would like to have the opportunity to enjoy an engagement much longer than Sean's. Hint-hint. The MS Nurse asked AGAIN if I had any good news to share. Just sharing.....]

So the nurse and I also discussed trying Baclofen to help with the nerve/muscle communication in the legs, as well as increasing the Neurontin in an attempt to shut down the inner mosh party from the waist down. Just last year, we decreased the Neurontin to help lessen fatigue. Aargh!!! But at least I did leave with five boxes (35 pills) of Provigil samples, worth almost $350.

So if I've seemed a little off...that's cause I have been...literally a little off to the right. I'm sorry. But as the EOB (Explanation of Benefit) forms start coming in for all these doctors visits, infusions, mri, more infusions, followed by more doctors visits, I'll have to give a summary of the cost of this relapse. At least nobody ever said that MS was an inexpensive disease.

Oh...and to top it all off...this happens to be a busy time of the year and I'm beginning to feel a wee bit stressed. No, make that simply more exhausted in all possible ways.


  1. WHOA! That is one hum-dinger of a scar! How are you holding up today?

  2. Hey Lisa, Thanks for leaving a comment over at my blog. It was fun playing tag, getting to know you better was nice too.

    I am sorry you are going through this. My MS is mostly in my spine and I know what you mean about the spasticity in your legs. I was on Baclofen for awhile and it did work for me pretty well.

    I hope that you enjoy your time before your next round of IVs. We all need to get out for fun. Florida is beautiful, we were just at Grayton Beach...HAVE FUN and wear sunblock!



  3. Sorry that you have been going through such a rough patch with MS. No matter what, we're all behind you! Can't wait to see an accounting of all those EOB's -- that will be an interesting post, to be sure.

  4. Sounds like typical attacks I've had. 3dys IV Sol, ni tapering. Took weeks for complete relapse, but in first 10 years after DX, always relapse with time. Sharpen your emotional tools. MS syptom will come and go until they don't and then you learn to live well with what you have. You will be fine. You will be strong. Fear not.

  5. Wow! Sometimes I wonder if the MRI technician "smudged" the film on my MRI's...your spinal "smudge" definitely looks looming.

    Sorry to hear you have been having such a rough go of it...may the force be with you...Nanu, Nanu, and all that jazz. Oh, and try to have some fun in Florida! :-)

    Linda D. in Seattle

  6. Lisa, I finally have had time to visit your site to get caught up on your world. I'm so sorry about your relapse and that is SOME picture. I hope you're enjoying the Sunshine in Florida and are feeling well soon!

  7. Thank for the comment earlier this week, Lisa. It looks like I am going to try Solumedrol within the next couple of weeks for 3 days. I heard that the most common side effects are an increased appetite and difficulty sleeping. I hope that's all I am in for. Thanks again for the note. :-)