Bad News or Good News?

My name is Margo.  I'm 25 years old.  And less than one week ago, I was officially diagnosed with Multiple Sclerosis, or MS.  I prefer to call it my brain's "self-destruct button."

Why am I writing a blog?  Because MS is scary, and I'm a scientist.  I learn best by writing things down, reading more things, then writing things down again.  I hope that my experience can help some people find comfort, or even push those who have questions to seek help.  I have had a lot of experience learning about MS over the years as a healthcare provider, but I never imagined that what I have been experiencing for the last four years was what I was reading about.

Okay, that's kind of a lie.  I had an inkling.  A clue.  A suspicion.  But I did nothing.
Why?
Because I kept getting told that what I was experiencing was 'no big deal,' it's 'just anxiety/depression/stress/graduate school/marriage/separation from friends/your mother/your parent's divorce/etc, etc, etc.'

And my favorite ones of all, see if you recognize the pattern and can fill in the ad-lib:   "'SO-AND-SO' that I know who is my 'SISTER'S FRIEND/AUNT/FIANCE/BOYFRIEND/ACQUAINTANCE/COWORKER' has MS and they 'DON'T THINK THAT'S WHAT YOU HAVE/DIDN'T HAVE THAT SYMPTOM.'  But this 'OTHER PERSON' that I know eats a 'VEGAN DIET/PALEO DIET/MORE DAIRY/LESS DAIRY/LIQUIDS TO CLEANSE TOXINS' and is almost cured from episodes."

All of these statements imply a few things.  It implies that they think you are crazy, and clearly what you are experiencing is invisible to them unless you say something.  It implies that MS is the same for everyone.  It implies that you can cure the problem by eating something, not eating something, clearing toxins, or what have you - and while they are saying these things to be helpful, also makes a dark implication that something you did or did not do is causing your problem, and you can get rid of it by being more conscious about what you eat/use for deodorant/are mindful of in life.

I am a religious person.  But God did not 'give me MS.'  I did not 'give myself MS.'  What a ridiculous idea.  I've clearly been dealing with symptoms for some time, but didn't have the guts, the insurance, or the time to get it taken care of.  I figured, if my issues were so vague and I could pinpoint them to other problems, why would I think they were all related?  What doctor would think I'm not nuts?  And how else are you supposed to feel when you go to the doctor for a bothersome issue, and they respond the same way as your friends, and tell you that 'eating more breakfast will cure that.'  That gem of a line was given to me by a GP when I was having heartburn so bad I could barely swallow - everything, and I mean everything, hurt to get down.  And she thought not eating breakfast was the problem.  HELLO?!  THIS STARTED YESTERDAY!  NOT EATING BREAKFAST EVERY DAY IS IRRELEVANT!

Ahem.  Clearly I've had a lot of time to be mad at doctors.  But I digress.

In 2010, I started having a rash of interesting symptoms.  We're talking, first day of January-ish.  In December, I noticed that I was having bad mood swings, and my eyesight was really degrading.  I couldn't read the TV guide on the screen, when a week before it looked crystal clear.  Sometimes I messed with my caffeine intake, so I assumed that was the problem, and the cause for the interesting and debilitating headaches.  Turns out, my vision was shot.  I had astigmatism, which clearly is genetic as everyone in my family wears glasses.  But now I believe the 'headaches' I was having were not true eye strain - it was optic neuritis, an inflammation of the optic nerve, and it was the start of it all.

Then came the nausea.  I thought it was the new birth control, and I immediately got off that.  Went to the GYN - felt like I was raped by a wand ultrasound with no warning, and there was nothing wrong with my uterus.  So I asked for a urinalysis to rule out a UTI - and they found signs of inflammation and/or white blood cells, so they gave me some antibiotics and sent me on my way.  Keep in mind, I had to argue with the nurse to do it, because I had no symptoms of a UTI.  But I knew something else was wrong, maybe that was it.

The nausea didn't stop.  But the anxiety became unbearable.  My entire life, I never had issues with real anxiety - I have depression, and they are NOT the same thing.  But I got married five months before in August, and my best friend and I had a falling out around the same time.  My family disapproved of the marriage and I was starting a religious journey at the same time.  I was applying to graduate school and my husband couldn't relocate, so it was this one program or nothing.  I hated my job.  My classmates conspired to make me fail because I was accepted early into the grad program.  I was surrounded with stress.  Why would I be surprised with some anxiety?  Some shakes ... that might be normal.  Hey, I'm a musician, maybe I overworked my hands.  I typed a lot at work - maybe it was carpal tunnel causing some tingling and shaking in my fingers.  I was off balance sometimes.  Seemed unrelated.  And I never dealt with acid reflux until now, but maybe that was the nausea, too. . . I had an excuse for everything.

Oh, did I mention that this was the last semester of undergrad, and my required coursework dictated a class in neurological disorders - - - in which, we were constantly being urged by the professor not to freak out and think we had all of the conditions.  We talked about it every day.  And here I was, barely able to sit through class and popping Pepto's like candy to keep from feeling like puking (and I am NOT a puker, just to clarify, I am a fainter).  The MS profile looked a lot like what I was dealing with.  But I ignored it.  And kept moving forward.  For six months, I felt like crap every. single. day.  And it nearly ruined my marriage, it killed my sex life, and my self esteem went down the toilet.

....

Fast forward to mid-February this year.  I had been dealing with some episodic issues that threw me back into feeling like an undergrad.  Some days, I would be driving in to work on a pleasant Fall morning - and all of a sudden, I would be hit with a pit-of-my-stomach nausea, the shakes, overall crap feeling.  But no one said I looked odd or pale.  My vision seemed to go in and out from great to crappy, but would go back again.  I'm applying for jobs like mad since graduation from my doctorate program is in May - maybe it was the stress again.

What I noticed was the stomach pain.  It was more like a torso pain.  Intermittently, I would feel like I was being squeezed like a vice.  Nothing helped - not Pepto, old and trusty - no way to turn, no massage, no passing gas, nothing.  Unpredictable pain.  And the last week of February, I woke up with a funny feeling that the pain would just be too much, and I should stay home.

I will never forget that Tuesday.  I woke up feeling pretty bad, stomach pain-wise, but the apartment was a disaster.  I spent the entire day cleaning.  I cleaned every room and did laundry.  I don't do things like that when it hurts to move - but I did it anyway.  I couldn't relax when my place was a mess.  My husband came home and I told him my back hurt; a usual hip pain I've gotten used to.  We went to bed, I intended to go to work the next day no issues, and the day was gone.

But at 4 AM, I woke up to my husband's loud snoring.  And I noticed that my left leg felt ... numb.  It felt asleep.  Like a pinched nerve, or cut off blood flow.  I had done a lot of work and my hips hurt before bed, so I turned over.  By 5 AM, there was no change.  And again at 6, when my alarm went off.  No change at all.  My foot was numb, my calf felt funny, and my thigh was ... well, it was like feeling your chin after getting dental work done.  Just ... nothing.  Which was fine, and ignorable, until I realized I couldn't feel the toes on my right foot, either.

I go to school for heavy duty neurological stuff sometimes.  I am slender, not diabetic, and couldn't have hurt my back without knowing it.  But I know how upper motor neurons work.  And I knew when I woke up on Wednesday that I was in trouble.

I casually mentioned it to a coworker.  She shrugged at me, thought it was nothing.  Just like everyone else when I mentioned the nausea, the blurred vision, the shakes, the imbalance.  Thursday the numbness felt worse, stranger, more debilitating.  But my legs LOOKED fine - no bruises, no change in color, no odd reaction to being touched.  Just the sensation was off.  I could move them fine.  I could drive.  I could feel enough of my right foot to feel safe doing that.  I called a neurology office and got to answer.  How long until this became a problem?

Friday morning, I couldn't ignore it any more.  I called in from work and went to the ER.  A urinalysis, several draws of blood, leg ultrasounds, three MRI's, and a spinal tap later = the ER doctor wanted to treat me for possible MS, and the steroids began.  That was the last day of February, and it was confirmed last Monday that their suspicion was correct.  So yes, I've had many weeks to process the possibility.  But the strangest part?  I didn't cry in my appointment.  I was not surprised.  I was relieved that he had validated all that I was experiencing, wrapping it all in a tight bow and calling it a name.  I knew what was going on, but no one had believed me.  It's hard to be MD-phobic and go to the doctor alone when no one thinks you have a real problem.

How could they?  You can't see my self-destruct button.  Only I know it's there.  I hope this first entry enlightened you, and might inspire you to find help if you think you have a problem.  It might not be MS, it might be nothing at all.  But don't wait - no one deserves to feel miserable and think they are crazy.

You are not crazy.  Maybe you have a self-destruct button, too.
Until next time,
Margo