Uncertainty

Well, not much to report.  No change.

I am fairly certain that I have an enterovesical fistula - which means there is a passageway between my bowel and my bladder.  This could explain all the weird urinary symptoms, with the absence of actual UTI.  I think it's a little bit odd that they did not find air during CT (which is the telltale sign of EVF) - but all my other symptoms seem to fit.

I'm doing an at-home experiment as a result, called the poppyseed test.  It's exactly what you think.  I eat a shit ton of poppyseeds (luckily I have a total addiction to almond poppyseed muffins) and watch to see if I pass any poppyseeds from my urethra over the next couple of days.

I am fortunate that actually passing small things from my urethra no longer causes me unbelievable pain - it's now only slightly uncomfortable for the most part.  I do occasionally have more pain, but it's few and far between.  Wish I could say that things were healing, but my urine keeps changing and getting darker.  I'm peeing blood again.  So today it's not really getting better, but how I feel is getting more tolerable.

Wish I could report that my MS was totally chill right now - I'm hating the fact that my leg spasticity seems to be on the rise.  Every morning when I stretch my right leg, it cramps up.  It's likely just a side effect of everything from the steroids (which keep me awake, give me heartburn, make my voice scratchy, yadda yadda).  Prednisone is seriously no fun.  Can't wait to be finally tapered off - only about seven more days!!

My life feels like I am at another set of crossroads.  It hasn't even been a year since I totally bailed from my first real job.  I loved that job, but there were so many things wrong with that location.  I just could not stay there any more, waiting for the ship to sink.  I felt guilty and terrible.  But it wasn't right.

Well, I feel like this just isn't right.  It can't be right.  I don't belong here!

There's gotta be something better than this
There's gotta be something better to do
And when I find me something better to do..
I'm gonna get up, I'm gonna get out, I'm gonna get up, get out, and do it!!

Love, MSloan 

Gilenya Lookout -

Glad I read this - I'm on Gilenya and couldn't take Tysabri because I'm positive for JC.  We'll see what comes of this!

http://www.nationalmssociety.org/About-the-Society/News/Second-Case-of-PML-Reported-in-Person-Receiving-Gi?feed=AllNationalNews

Star Wars

Today, I got a call from my neurologist.  Turns out, they were able to get my brain MRI results despite my insurance not covering the cost - I suppose I will get a big bill for that later, but I'm glad that they saw them, as it turns out my last round of steroids was, yet again, unsuccessful.

My MRI shows that my lesions are not necessarily getting bigger, but now there are new ones.  This is not a good sign.  Though it is somewhat amusing to consider that my body's inflammation 'laughs in the face of steroids,' muahaha!

I have done a little research on the drug they are going to put me on next.  Let's learn about it together!

1) What is it?

The name of this drug is 'Acthar,' which reminded me an awful lot of Star Wars, hence the comic at the end of this post.  I hope you find it mildly amusing :)

Acthar is called an Adrenocorticotropic hormone, or ACTH.  It is meant specifically for acute exacerbations of MS (though I don't know if I could call this an acute exacerbation if I've had this for three months and it just isn't getting better.  I don't feel good about that, but let's move on!)

2) What makes Acthar different from the steroid injection treatment?

Acthar is not a steriod, but it acts something like one.  It forces the body's adrenal gland to go on hyperdrive and produce a hormone called 'Cortisol.'  You might recognize that as a word you hear in diet pill commercials as the 'stress hormone,' which increases body fat in certain places and in general just causes all sorts of problems.  Well, Acthar wants to use those crappy side effects of Cortisol to treat your MS!  It basically tells your immune system and inflammatory response to STFU.  It is essentially a natural steroid.  It can increase body fat, increase fluid retention, decrease your body's ability to process glucose, increase your likelihood of stomach ulcer - lots of problems.

Acthar is also not an intravenous drug, meaning it is actually given in the muscle, like you would a flu shot.  It shouldn't be taken intravenously because it can spread through your system at too fast a rate; this is why heroine addicts prefer a direct vein to shooting themselves in the leg.  You have to give this drug to yourself in a syringe for a number of days when you receive it.  I will not be doing that, I will be checking into my neurology office every day for 5 days until this is over.  I have put on a brave face this whole time, but I really do not like needles, and I don't know if Steve has the strength to do this for me right now.  I haven't told him yet.

It will be a fun ride for sure.

3) Why do you need this drug?

You need this drug if you have 'failed' steroids, which means you are still having an exacerbation and inflammation after being treated.  I have failed steroids twice now, and have new lesions, which means somebody, somewhere, needs to tell my inflammatory system to STFU.  That is where Acthar comes in.

My insurance company should cover this now that it is a justified use of the drug, you have to fail it twice for the company to give it to you as these little vials cost about $50,000 (that is straight out of the horse's mouth, the neurologist, when telling me about this a few weeks ago as the next option). 

4) Okay, so it should halt the progression.  What are the downsides?

It can cause wicked bad mood swings.  There's a huge paragraph warning about this; I already suffer from mood swings with my depression, so I'm sure I'll be way pleasant in the next couple of weeks.  General body swelling is another side effect.  This is the sort of drug that you absolutely cannot accidentally become pregnant while on, too.

I'm going to go grab my laundry now, as my life cannot stop though my brain clearly wants me to take a break!  I hope this helps someone out there get a better idea of what is up ahead.  I will continue to update as a know more.  Thanks for listening.

Let's hope Admiral Ackbar isn't right this time...

Don't Move, Don't Breathe, Don't Do Anything Except... Pray

Today was a rough day.

You know what I mean, rough day?  Like, everything makes you want to cry kinda day?  It was definitely one of those days.

Yesterday, my husband got word from one of his dissertation committee members that he may not be able to present his defense at his proposed date - setting us back yet again.  We are on the threshold of moving out to California pretty much in the immediate future, and it looks like I will have to move out without him to start my job while he gets things finished.  Way stressful.  So let's start the day there.

I work in the medical field, and specifically, I see a lot of MS patients for a variety of complaints, mostly balance and dizziness.  As such, I see some of the 'worst case scenario' type of people - young women in their 20's and 30's who are dealing with debilitating imbalance, walk with canes, can't feel any of their extremities, have so much difficulty with cognition that they can't list names in alphabetical order - lots of scary things.  And of course, this morning, I had someone who was on the higher end of MS symptoms.

I truly love my job, because the people I see need me as much as I need to see and help them.  It is healing on both fronts.  But it is particularly difficult for me to see MS patients right now because I'm still trying to figure out my illness, and it isn't something you just casually share with others.  You want to tell your patient, 'I Understand,' because for some of these things, I do - but you keep your mouth shut, and you treat them the best you can, and you listen the best you can, without interruption.

It doesn't help the heartache when they leave that there's very little you can do.  And it doesn't help you feel hopeful that your own condition won't look like that in a few years.  How else are you supposed to feel about MS when that is what you see every week?

Later today, I had another appointment with the radiologist and hour from work.  I knew they wanted a contrast MRI of the brain, cervical and spine, but I didn't know they wanted both with and without contrast, which means I had to lay in the MRI machine for 90 minutes.  That is a VERY long time in a noisy little place where you can't move, have a headache, have claustrophobia, and then have gadolinium put in your arm while they tell you to try not to move while they give you the IV.

Really, like in the movie Atlantis, 'Don't think, don't breathe, don't do anything except... pray.'  It's really how you feel.  And about 80 minutes in, I started to lose it, and wanted to scream to get out.  Something about the sound of the machine when you have the contrast material is different, and it shakes the whole machine, making you feel like you're trapped in a bad car ride.  When I have nightmares, I hear sped up speech and repetitive sounds, just like the MRI.  I almost started to cry, waiting for it to end, counting up in multiples to try and distract myself.

Obviously I made it through okay, but what a nightmare.  I am usually very good with things like that, I hold stock still, but today was so hard to leave and not have someone in the waiting room for me.  Oy.

At least I grabbed a bagel on the way home.  It's Friday, right?  Until next time -