Thursday, January 8, 2009

I was wondering what I should blog about...

...when my body decided to respond with it's first MS attack since starting the trial. Sheesh! Guess I should have thought up something on my own sooner. I'll know not to go on hiatus again, that's for sure.

And to top that off, I'm going for the real drama and digging deep by having a HSV attack concurrently. Hence the reason I'm writing this at 4:30ish a.m.

I guess my body felt I had deprived my readers of any real interesting Fingolimod related MS news for too long. It all sounds way more dramatic than it is, tho, trust me.

I knew my winning streak would eventually have to come to an end. Nobody ever said Fingolimod cures MS no matter how much I had convinced myself that it had cured mine.

It all started a short while before Christmas. It could have been a week before or just a couple days. Anyhow, it wasn't any big major thing that slammed me to the floor and made me drag out the calendar to circle the date in red or anything. In fact, the symptoms have been so mild that I had to pick a day out of a hat to claim that's When It All Started. I picked Dec. 22 since I like that date and I had said "a few days before Christmas" when reporting this to my study nurse.

I started getting itchy on my neck. I know MS is different for everyone, but I think I probably have some of the weirdest symptoms possible. When a new attack starts, I get itchy. Real itchy. Either on my scalp, or someplace along my spine. Thankfully not many attacks have me itching between my shoulder blades where it's so hard to reach. Small favors, eh?

Anyhow, my neck was itching. Right at the base of my skull on the left side of my spine. I would scratch it and forget it -- kind of like all my losing Lotto tickets. But then a few days later I awoke with Weird Symptom #2. Painful tenderness under my breasts.

If any of you women out there have had tender boobs at That Time of the Month, then you know what I mean. They hurt to move, let alone wear a bra. Before I got into this study, my breasts hurt like that pretty much non-stop for months, maybe years. I don't remember, I just know I was miserable in my own private hell that way. It's not like someone can say "Hey Jeri!! I haven't seen you in a while! How've you been??" and I can answer "Oh great! Except for the fact that my boobs hurt so bad I feel like I've taken a bunch of punches to the chest from Evander Holyfield or something." No, pain like that you suffer alone, elbows out to protect against accidental contact with anything that might bring that pain more sharply into focus briefly.

And the tenderness can't be due to my "time of the month" unless a) my time lasted FOR months at a time, or b) I was having ghost pains to female parts I no longer possess since having a hysterectomy (they sure like to use "y" in medical terminology a lot, don't they?).

I'm suspecting there are lymph glands in that area, just beneath the bottom of the breast and circling up to under your arm (where I know for SURE there are lymph nodes). And I suspect that the simmering inflammation I had experienced for years with my MS prior to this study was the reason for the constant pain which miraculously disappeared when I started the FTY720.

Until now. Well, really, until 5 days ago when I started back on the Fish Oil I had stopped. I was taking it for quite a while until I ran out and neglected to buy more a couple months ago. I read something the other day about how Omega 3 is a better anti inflammatory than Ibuprofen, so I decided to snitch some of John's capsules.

He bought the stuff off the TV ad that claims to be better than regular Fish Oil and you can get 3 bottles for the price of one or some such crap. All I know is I heard him arguing with the people on the phone about how they charged his credit card for a hundred bucks and sent him 3 more bottles before he was even finished with the first 3. I felt sorry for the verbal beating the person on the other end of the line was taking, but I had no need to ... they were GOOD! Before he ever got off the phone he had settled for removing $50 from the credit card charge and sending a couple more bottles (I guess he forgot how he didn't need the 3 he just got with no prompting).

John can spare a bottle is my point.

After 3 days of the Fish Oil, my breast tenderness was GONE. Now, there's no way to ever know for sure if it would have just gone away spontaneously with no action on my part or not (kind of like the big debate about MS drugs working or not) but nonetheless (I just wanted to type that because I like to run mywordsalltogether like that) it quit.

So there I was, my neck itching on and off, and my boobs hurting. Big MS attack. Ooooo, scary, right? I didn't think so either. So I convinced myself for the past couple of weeks that it was all in my head since so many things are, given I'm a professional hypochondriac and all.

Not so. A new symptom arose, and another old one made a guest appearance.

The old one is the burning, fire-like, don't-know-if-I'm-on-fire-or-standing-in-ice feeling. At a certain *volume* it's not an unpleasant feeling and can keep me feeling warm when it's chilly out, but that's usually only the case when it's first beginning or finally going away. Most of the time it's OH-MY-GOD-THIS-HURTS intensity, which is not as pleasant. Right now it's still vague and interesting.

The new one is issues with my arms. My arms have been pretty much left alone by the MS for the past 10 years, mercifully. So when I've been having trouble even turning a door knob lately, I kind of had to take notice and quit blowing off the whole "is it an attack or isn't it?" issue.

It's really subtle, tho. Like my grasp is a little weaker. I find myself grabbing a doorknob and, with what I think is my usual grip, trying to turn it. My hand slides around it like it's coated with a nonstick surface or something. I get the door open every time, it's just something that made me go "huh" for a second or two.

Then, while holding a bottle of Zephyrhills water I can feel it slide down. Darn, has everything in my world become slippery?? I've dropped a few things but I'm especially vigilant when drinking my coffee in the morning. I really don't want to test out whether or not my lap is numb first thing in the morning by dropping a mug of Folgers on it.

I mentioned all this to my mother, since she's my guru of hypochondria and the one who taught me everything I know. Well, that's not true really. She's not a hypochondriac but more of a Master Worrier.

Anyhow, she got that concerned look on her face and tipped her nose in the air so she could inspect me through her bifocals, like she was going to see something different. Then she started making sure to ask as casually as possible how I was "feeling" every day during our ritual phone calls.

I sometimes feel just fine, but then other times, like when I'm trying to fall asleep, I notice my arms feel like I've been used as a floor jack for a monster truck all day. Extreme muscle fatigue after doing nothing more beyond hoisting Folgers and Zephyrhills to my lips that day. For Cripe's sake (whoever Cripe is) I haven't even been picking up a fork as much lately since I started this South Beach diet on the 1st. (I'll blog that later). How can my arms be so utterly exhausted?

With some sleep, that muscle fatigue fades.

Then I awoke yesterday and my left hand had a charlie horse in it and both hands tingled slightly.

Okay, I get the message. This has GOT to be a new MS attack. And of course my left hand is worse than my right because Murphy and his stupid Laws probably dictate somewhere that if you are left-handed then bad things affect your left side more.

So I made the call. Yesterday morning I called my trial coordinator and told her of my new, not so exciting, symptoms. She asked me to rate the attack from mild to severe and I told her it was extremely mild. So mild as to have had me convinced for the 2 weeks prior that it was all in my head. Well, if the lesion is on my brain, then it technically IS all in my head, but you know what I mean.

She said she would report it to the neuro and get back with me. Nobody has called yet.

That was before I got up earlier at the crack of Let the Cat Out so She'll Shut Up and discovered I'm starting to have a herpes outbreak. Oh YAY! I get to find out what Fingolimod, active MS, and active Herpes all have in common and I'm hoping the punchline isn't "it's gonna kill ya".

I made it through that one Herpes outbreak I had that was prompted by learning the news of the herpes virus related deaths in the fingo study back in Feb 08. Now I guess we have to experiment with herpes, and MS being active while on Fingo. Blessedly, even tho I'm scared crazy about it, both the MS attack and the herpes attack seem to be very mild. Quite possibly due to being on the Fingo in the first place.

I mean, if I have to wonder if I'm having a relapse or not, as compared to before, when I was dragging myself around on one or two canes and not needing to wonder if it's really an MS attack or not, then I guess this Fingolimod is still good stuff! Even tho it apparently didn't CURE my MS <-- a fact over which I'm more than a little miffed (that's too cute a word to mean what it means, isn't it? Sounds like a poodle's reaction or something. Fluffy was miffed.)

I knew the time had to eventually come for my high flying, invincibility cloak of wellness to drop to the floor and unveil the MS monster again, but this time he doesn't seem any more terrifying than Fluffy the Poodle.

I'll be sure to let you all know how it goes. I'll have to wait another 4 hours or so to inform the trial nurse that I'm now having a herpes outbreak too. I bet a get a call back THEN!


  1. Well Cripes (actually I know somebody whose name is Cripe, good horn player) - I'm slow to admit that an MS attack might be going on, too. Guess I kinda figure that if it goes away on it's own after two weeks or so, then it really wasn't an attack, right?

    But the HPV outbreak really doesn't sound like too much fun. Just think, you get to single-handedly affect the numbers to be calculated at the end of the extension trial.

    Don't you feel powerful now?

  2. Thoughts and prayers are with you.

    As Lisa stated, you'll help move the study forward with new data.

    You're so brave.

    Hugs honey!

  3. Jeri, I hate to hear this :-( , but I know that you'll overcome this BUMP in the road, (and no doubt with the same grace and humor that you always show!) You'll be in my thoughts and prayers. Deborah

  4. Aw, honey! Hugs to you!
    I'm sure this feels like a big disappointment - but hang in there. Considering everything, this is a blip on the radar. You have come so far!

  5. Damn! When it rains it pours, eh? I'm sorry everything's gone wrong at once, but maybe everything will get better at once too?

    I have to admit that while it's unfortunate, I think it's kinda funny when our bodies realize they've been duped by the medicine and decide to throw a hissy fit in response. I hope you can trick yours into settling down again.

  6. Jeri, my heart just sank when I read this - although I have faith that it's temporary I hate to hear you're going through it. Suze said it good - it's a radar blip - healing energies, blessings & good thoughts coming your way.

    Cindy @ Gypsum Moon

  7. OK, I need permission here to laugh AND be compassionate/concerned about you. I mean, you DO tell a funny tale about some not so funny things.

    Here's to Fingermylid (I just like saying the drug that way) keeping this attack at a minor roar!

    Linda D. in Seattle


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