Remission is remiss

Frank’s right thigh has been inexplicably cramped for about the past four weeks. He can’t bend his leg back further than about a 45-degree angle without his thigh seizing and causing pain. Hoping that it was just a random muscle pull, Frank tried several basic treatments: ice, heat, elevation, rest, ace bandages, Ben-gay, Icy Hot, massage – nothing has helped. Last Friday at my urging (read: You WILL pick up the phone and make an appointment ASAP!!!), he scheduled a visit with his neurologist.

Dr. Mikell is petite, with porcelain skin, watery blue eyes, and banged, ear-length, bobbed blonde hair that would look more in place on a 5-year old than on a woman in her mid-fifties like herself. She has a small, sharp, beak-like nose and she flits about on tiny feet. She doesn’t walk so much as she tippy-toes around the office in functional, yet stylish flats. She reminds me of Woodstock, Snoopy’s tiny yellow feathered friend who couldn’t fly a straight line to save his avian life. Though she only sees Frank every six months to a year she always clearly remembers him. Not just the stuff she can glance over in his chart the second before entering so she can feign a good doctor/patient relationship, but little conversational things that aren’t documented, like how Frank enjoys cooking. I like her. She is as direct as her nose is pointed and , doesn’t dick around with such BS as, "Let’s just wait and see…."

In her typical staccato rhythm, today she said, "Ooo. Not good. Let me see you walk. You’re limping. Hmm." Tap, tap, tap. Tap, tap, tap. "Well, your reflexes look good. Not much spasticity. But this is not normal, this tightening. It’s not common even in MS patients. Interesting. But it’s definitely the MS. Thank goodness this is the worst symptom he’s presenting with because his last two MRIs looked awful! So he’s done good. But! This worries me. I think it’s time for a stronger med. Time to move up from the Rebif."

And from there, she chirped out our two options:

  1. Tysabri – a veritable gamble. It is a new medication that was first released a few years ago. Just before it hit the market to the general public, Dr. Mikell told us about it as our next move if and when Frank’s symptoms worsened. We were somewhat interested because it was a once per month IV treatment vs. Frank’s three shots per week. Within a year of its release there was a massive recall due to the development of a horrible side effect called PML which caused severe illness and even death in 2 patients. Today Mikell recounted this and explained that since then, they’ve discovered that the problem is largely due to taking Tysabri in conjunction with a beta interferon, which is the class of medication that Frank is currently taking and is a first line of treatment for new patients. She described PML as "…basically the brain kind-of eats itself, but it’s highly unlikely that would happen," and she shooed it away with a quick flick of her hand. Then she went on to rave about all the good it has done in vast majority of the patients and how the benefits outweigh the nearly-microscopic risks. However, according to the literature she gave us to read through, there is no long-term data on Tysabri use due to its newness, which unnerves me. It’s known that some people develop self-cannibalistic brains; what the heck do we not know about it yet?
  2. Mitoxantrone – a form of chemotherapy obviously used for different types of cancers, which also has been approved by the FDA for MS when other treatments have shown to be ineffective. This would be an intravenous treatment administered every three months. Frank doesn’t have cancer but chemo is chemo – hair loss, fatigue, nausea, vomiting, possible heart complications. Chemo is old and it is known.

Both meds fall into the territory of Seriously Heavy Shit. The possible side effects of both are far worse than the leg cramp, which is more a nuisance than anything else. But that’s how MS sometimes works – the outward symptoms are just an indicator of what’s going on inside with the brain and spinal column. If there are active lesions, in the long run it’s better to treat those and risk developing medication side effects that are worse than the MS symptoms themselves.

Within the next month Frank will have a repeat MRI of his brain and spinal column as well as some psychometric (???) testing. I wasn’t able to commit the exact term to memory because my brain was stuck on "the brain kind-of eats itself." Frank has another appointment with Dr. Mikell in early July to discuss the results as well as decide what to do about the next step in his treatment. Between now and then, we have lots of research to do and many questions to ask. We have a couple of months, and for now I am in no hurry to start having lengthy conversations with Dr. Google. I can’t yet think past the semi-sketchy information given today. I need to let this brave veneer thicken a bit first because if I scratch too much right now, I’ll find out how deep my scared shitlessness is running.

8 thoughts on “Remission is remiss”

  1. My shitless IS running on freakin’ worried beyond all belief. I’m so mad that this wasn’t just a cramp, Moxie, because like you, I was not even going to entertain the option that this was something caused by the MS. Naturally, you guys are always in my thoughts and prayers. I know what it’s like to have to make those “lesser of two evils” decisions concerning medications, and I hate that you are in that position too. I’ll call you tonight after teeball practice. I love you all so much.

  2. The first thing that comes to my mind is, “that just sucks!!!” I am so sorry that you are having to deal with this. You are both obviousely blessed to have one another! You will get through this together! I will keep you all in my thoughts!

  3. Stinkin YUCK and *&%@# !!!! I’m am so sorry, what a shitty decision to need to make. I hope you find clear indicators which way to go and have immense peace with your decision. I pray the MRI shows a miraculous improvement that confounds Dr. Mikell and most importantly that Frank lives a long life, fully functioning and pain free (hey, if you’re praying you might as well ask BIG). ((hugs))

  4. Stinkin YUCK and *&%@# !!!! I’m am so sorry, what a shitty decision to need to make. I hope you find clear indicators which way to go and have immense peace with your decision. I pray the MRI shows a miraculous improvement that confounds Dr. Mikell and most importantly that Frank lives a long life, fully functioning and pain free (hey, if you’re praying you might as well ask BIG). ((hugs))

  5. Shedding a few tears for you and your family, MS is one fucked up disease isn’t it? It sounds as though Frank has an excellent neurologist, that’s half the battle sometimes! I would be very hesitant about Tysabri as well. It’s not being released/funded here until July, but it scares me, it really does. And chemo isn’t a great deal better either. But, as you say, at least chemo is old and known. Hugs to you.

  6. Oh, man. My heart hurts for you guys that the leg cramp wasn’t just a leg cramp and that you have to make a decision between options that are much less than ideal. I will hope and pray that you and Frank are able to come to the decision that will be best for him and that his body will respond remarkably to whatever treatment you choose.

  7. I’m so sorry to hear this. MS totally sucks. You’ll be in my thoughts and prayers. Hoping this all works out for you!

  8. kymberli, I hope frank is ok and that you get some better news in july. MS truly sucks and I’m so sorry he is afflicted. how hard that must be for all of you. please be careful with dr. google — sometimes he’s a big jerk and prone to scare tactics.
    wishing you all the best, as always. ~luna

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