And it goes around and around and around -

Well, I have an MRI scheduled for Saturday morning, bright and early.

My neurologist was very kind and immediately got the ball rolling to get it scheduled, which I really appreciate considering the fact that he has only met me one time and he wasn't my diagnosing physician.

That being said, I am still hopeful that I am somehow very wrong and this is due to my pregnancy - but according to him, that usually happens because of weight gain and water retention, and neither of those things have really happened to me yet.

I am not gaining enough weight for my pregnancy.  I know I am very stressed out, and I am worried about what that might do to the baby.  I read that it can cause behavioral abnormalities and even possibly autism - it's just terrifying to think that even without smoking or drinking I could mess my kid up before they even get here.

Le sigh.  But a doppler is coming tomorrow in the mail, so when I get to bug my squishy and hear the heartbeat, I will try to upload a quick mp3 file!

I did a lot of reading today on what drugs might be viable during pregnancy.  I know Copaxone is, but I am not at all wanting something I have to inject if I don't absolutely have to.  I know Solumedrol is a viable treatment for relapses during pregnancy, but it makes me feel so damned lousy; my neurologist said that many pregnant women decide not to be treated if they have a relapse.  I don't know what that might mean, considering the last time I was treated during a relapse, my lesions still tripled in size, I had terrible issues with word finding, optic neuritis, dizziness, and L'Hermitte's Sign.

For kicks, I read about Acthar, as that seemed to do the trick last time, but read that it is known to be "Embryocidal."  WOW.  What a freakin' word.  Definitely not doing that one while I'm pregnant.

I will give another update if I get my doppler tomorrow, otherwise probably not until after my MRI on Saturday.  Keep your fingers crossed that I'm wrong and the MS is still sleeping!

MSloan

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...

Short Circuit

The unknown is the scariest part of this process.  When things start feeling better, sometimes they are not, as I learned recently; I thought my flare up was over, and I was finally healing and at a reasonable baseline, only to find out my lesions were continuing to spread.  Yeah, there's the big one, but there's another one as well, and now one in my cervical spine that gives me bad tingles when my neck is arched forward.

Today the sensation is just... well, numbing.  An absolutely constant tingle in the legs that is distracting.  It feels like they are being rushed of blood, which makes you not want to stand or walk - psychologically, it can make you feel disabled even though your motor skills are exactly the same.  Like a short circuit in someone electronic, there's power going to the components, but they just aren't working properly.

It doesn't help that the oral steroid I'm taking absolutely tanks my blood pressure.  I have to maneuver a fair amount at my job, and after standing up after looking in someone's ears this morning, all I could see was stars. Now, since I've been dealing with trouble symptoms like dizziness, nausea, seeing stars, lightheadedness, and general malaise for the last four years, I have become a master of feigning being okay while chatting up a person - and then suddenly coming up with a legitimate excuse to leave the room for a moment.  But nevertheless, it is embarrassing, and it didn't put my day off at a good start.  Yesterday I had pretty hard chest pain in the middle of an appointment and had to just keep talking through it, and then later today someone wanted essentially the entire mechanism of hearing explained before their test - usually I absolutely LOVE that part, but today I was worried about passing out.  Just a bummer in general.

With the new issue of leaning my head forward causing more tinglies, it makes me apprehensive to say I'm doing better.  I have to put faith in these steroids, but at the same time, I am not so sure.  If I feel better without the drugs even if my MRI shows I'm 'getting worse,' which is the lesser of two evils?

I wish I got the medical bill in the mail already.  All this waiting is driving me nuts.  I know I can't afford it, but I would rather know just how much I can't afford, know what I mean?

Merit Badge for Demyelination

Oy.  Okay, so today has been one of those really rough days.

I got my contrast/non-contrast MRI update on Friday, and of course had to spend the 90 minutes stock still in the machine.  Which, if you've never had to do that, feels like torture after about 80 minutes.  It's not so difficult to fall asleep about 10-15 minutes in, but it's the last 10 minutes that you're screaming in your head, "Get me out of here!"

So I was hoping that the MRI experience would be over for this year.  WRONG.

Today, I was supposed to go in to start Gilenya.  I had a difficult time reaching my neurologist over the last few days because there must be a problem with their phone system; I didn't even get a reminder call about when I needed to show up and start the process.  So I decided to go in way early just in case.  I was, to be fair, fuming a bit because the only thing I had heard from them this week was an ominous phone call on Monday night: "Please give me a call back as soon as possible, thank you," nothing else.  So who else wouldn't be freaked out?

When I went in, I basically got my hand slapped for not signing a piece of paper I didn't know I needed.  But then the MA started telling me that my doctor was concerned with my latest MRI, and didn't think I should do Gilenya, and that I needed to do something 'more aggressive.'  I didn't know what this meant - but then she continued, saying that my lesions have gotten significantly bigger since the previous MRI, meaning that I failed the first round of Solumedrol after my ER visit.

WHOA, hold the phone, I failed?  Let's recap.  I went to the ER, feeling ok but numb from the waist down on the left side and foot on the right.  After a battery, got diagnosed, then treated with a 5 day course of Solumedrol.  It did nothing for my numbness, just made me feel like crap - and it turns out it did virtually nothing anyway.  The 9mm lesion in my left temporal lobe is now 3.3cm.  Centimeters!!  Tripled in size.  Whoa.

Just, whoa.  How are you supposed to feel about that?

They're going to put me on another round of the steroid (that made me feel like hell) and then another week+ of the oral version to taper it, then start me on the Tysabri infusion ASAP.  I need to find a place to do bloodwork pretty much immediately to get on the Tysabri - and did I mention that I'm moving to another state in about a month and a half?  What a freaking nightmare!!!

Oh, and did I mention ... happy birthday to me?  OY!