At The Bitter End -

Happy Saturday, Everyone!

I'm having a bit of a dilemma.  I need some advice on MS meds to start after pregnancy.

I know I've gone through all of them that were offered to me before, but now that it's been over two years, there have been many changes.  Since I started taking Gilenya, there was research out about it causing PML, and you now can't miss even a single dose before you get dragged back in for monitoring.  Now they can monitor you from home, but that seems so unnecessary to me.  Back then, I could have missed my pill for almost a month before my doctors would freak out.  I loved Gilenya, I didn't have any noticeable side effects from it, and it was so easy as a once/day pill - - but I don't know if my neurologist is as committed as I am to getting the pretest stuff completed so that I can take it.

I am not up for taking Tecfidera, because I am already prone to nausea as a result of my MS, and the absolute last thing I want is a drug that could potentially give me that side effect for a long time, as well as flushing.  It just seems like more of a pain in the butt than I am willing to deal with.

I was initially recommended for Tysabri but I am JC virus positive.  Not sure I want to risk PML and there's the 2nd pregnancy question, which affects the next one, too.

I looked into Aubagio, and while it seemed appealing at first, finding out that I would have to stop it a full 2 years before planning to get pregnant again scared me.  Granted, I may not ever get pregnant again, this has been an incredibly stressful and painful experience and the fact that I can't protect my brain or my baby with medication while pregnant  just terrifies me too much.  I was told up and down that there was so little risk to both of us with me getting pregnant because my MS could be expected to fall dormant, only to experience several distinct flares.  There's no way to know if I would happen again ... but seeing as I literally cannot see effectively out of my right eye anymore, I'm not sure it would be worth it.

This is going to be a hard call, because I know many of my other options are shots.  Needle fatigue scares me, but I'll do what I have to do.  Any advice on experience for these things is so appreciated!

Whew.  At 37 1/2 weeks pregnant, right now I am noticing how bad my eye is doing today.  I am getting off/on feelings of numbness in my left calf.  I will be having an MRI shortly after my daughter is born, and I'm putting it out there right now that I will be beyond shocked if I don't have any active lesions at that time.  But I could be wrong, I hope I'm wrong, and that I'm just having recurring symptoms.

In audiology, people who have bad vestibular neuritis and don't receive treatment often have permanent hearing loss.  This is essentially the same thing that happened with my eye.  I am not at all happy about this end result, but I have to admit that there is a little bit of "I told you so" that I feel towards the folks who kept trying to assure me that my eye would go back to normal because their "friend with MS had the same thing and it went away after a few weeks."  No, my MS is not vanilla flavored, I have fucking Eggnog flavored fat free MS that's on limited supply and it is very different from your friend's disease.  That's great that she had ON and it got better, but mine didn't.  This wasn't because I had a poor attitude, it was because I didn't get treatment!  There is a real consequence to not acting on bodily inflammation, I didn't freaking make it up to make you feel bad.

Oy.

So back to square one.  Advice and experiences from your medication experience is welcome.  I know I will get to discuss all options with my neurologist but as I got the impression he wasn't on the same page that I was, some ammunition with more information will really help me out.  And prayers for the babe, she's due on the 20th but I hope she'll arrive any day now :)

Love, MSloan

MSminds Chat - 3/16/2016

I found another chat on Twitter today - this one is called MSminds! 
Feel free to copy/paste the questions to your own blog, and keep the conversation going :)

Q1) Has MS had an affect on your mental health?

Yes and no.  I have always suffered from depression and anxiety, but it definitely has spikes.  It hit a huge peak right before my big flare that got me diagnosed.  However, I credit my ability to "handle" the situation to my depression - I was so emotionally numbed in mood that I wasn't able to truly internalize the situation.  Saved me a lot of pain.

Q2) What has your experience of mental health support from healthcare professionals been like?

Surprisingly good, at least as far as my MS is concerned.  My first neurologist asked me if I wanted to be put on an anti-depressant.  It was the first time I had ever been asked by a doctor, despite years of reporting issues with depression and anxiety.  I initially said no - but knew that I needed to do something.  I told her, "Actually... actually yeah, yeah I do need an anti-depressant.  Thank you."  Best decision I ever made.

Q3) What do you do to boost your mood?

 I have started writing a "Positivity Blog," every single day.  I include one thing I like about myself, one thing I do well, one thing good about the day, one good thing I'm looking forward to tomorrow.  Really is starting to help.

I also am an artist and a musician, and I participate an awful lot in what I call "art therapy."

Q4) Do you use any digital tools or apps to help look after your emotional wellbeing?

My blog!  http://itoocanlovemyself.blogspot.com/

Q5) What more could be done to educate MSers about looking after their mental wellbeing?

Let them know that there is nothing scary about medicating for depression/anxiety/etc.  I really think my anti-depressant did so much to reduce my stress level that I wonder what was more effective: my anti-depressant, or my disease-modifying-medication (Gilenya).


Thank you all, this is a really important topic!  I would be happy to discuss my experience with anti-depressants if anyone needs advice.
Love to all!
MSloan 

Chat MS - 11/30/2015

This last Chat MS was all about MS research, a topic dear to my little science heart!  Please don't hesitate to copy/paste to your own blog to keep the conversation going!

Q1 – Do you keep up to date with latest #MultipleSclerosis news and research articles?

I do a bit - since I am in the loop for new hearing science developments, I occasionally come across good Multiple Sclerosis treatments.  I do of course read the ones that get distributed by the National MS Society.

Q2 – What is your “go to” place for the latest in #MultipleSclerosis information?

National MS Society and, believe it or not, Twitter.  Unlike Facebook, I have found the Twitter is a really great way to stay up to date on the latest research and developments with MS because I follow a fair amount of heavy hitters.  I recommend it to anyone looking for regular answers and a real community.

Q3 – It seems each week there may be a breakthrough or “game changer” when it comes to treatment. What has you excited the most?

Ah man, I see this all the time, but honestly I haven't seen a lot of stuff that excites me.  However, my dad hears things all the time and is really excited about them for me.  He learned about the bee sting study and got really hyped up and told me about it every time we talked on the phone for a month.  My dad doesn't talk to me on the phone.  So yeah, he thought it was a pretty big deal!

Q4 – Have you or would you ever enroll in a clinical trial to see how something new may affect your MS?

ABSO-FREAKING-LUTELY.  I have been a part of a research study on physical ability and MRI correlates at the University of Colorado at Boulder.  I enrolled just after my diagnosis.  It is SO important to participate in research, even if it isn't a clinical trial.

Q5 – In many cases we see articles claiming breakthroughs but never seem to hear anything else. Why do you think this is?

This is the sad reality of science.  Single studies are not enough to effect real change.  Some studies look great on the surface, but repeat studies do not find the same thing.  There has to be a repeatable response for it to be transferred into a real FDA-approved treatment.

Q6 – There are trials on-going for treatments that repair myelin. Would you be interested in this? Or is it “just another drug”?

I think this is excellent!  But right now - - I am a bit skeptical.  I fear that medication that can increase myelin would be hard pressed to be controlled enough not to over produce and cause an adverse effect, specifically causing other diseases like neurofibromatosis, which is essentially the evil opposition to MS.

Q7 - What is a cure to you? Stopped progression forever? or complete reversal of symptoms? 

Both of course!  Stopped progression is incredibly important to me.  More research on medications and the JC virus.  More research on effective medications that don't cause OTHER problems.

Q8 – Do you think we will see a #MultipleSclerosis cure in the next 10 years?

.... realistically?
No.  I am not trying to be a bad news bear, but even if there was a major breakthrough in the progressing of MS and how to halt it in its tracks, it would most likely be over 20 years before we see that get distributed out to the masses.  Because of the nature of MS, the relapsing part of the disease makes it all the more difficult to understand the effectiveness of things such as 'cures.'  There's very much a difficulty here in how to determine what is really causing the relapses to halt - is it because that person's disease is just relaxing?  Or is it because of the medication?  This is why MS is so hard to pinpoint.

Thanks for reading, all!  MSloan

Feeling Low

Sometimes I feel like I'm climbing a mountain with no summit and no oxygen.  I keep climbing and climbing, but I just can't get there.  I am frozen with cold.  I can't feel my feet.  I can't feel my fingers.  But I keep climbing anyway.

What am I doing this for?

Looking in the mirror lately is just that much more difficult.  I'm breaking out and the acne won't stop.  My hair is a disaster.  I want to get it cut but I can't afford it, and I really can't afford the maintenance trims on a short cut right now.  I am not gaining enough weight, which is stressing me out.  The stress makes my MS worse.  That stresses me out even more.  So I don't eat, because I'm stressed, and have no appetite.  So I'm not gaining enough weight.  Which stresses me out.

Forget the mountain.  I'm on a bridge that goes in circles, precariously over a disastrous cavern, with no end in sight.

I asked him to do a single thing, load the dishwasher, three days ago.  He keeps telling me how tired he is.  I am trying not to be insulted.  But then he mentions it again.  Talks about it when he's home from work.  Complains when he gets up in the morning.  "I'm tired."  I'm sorry you're tired.  I'm pregnant and have MS, work full time, and then have to take care of this house when I come home.  You stayed home for 2 days this week and cleaned not a single inch of this apartment.  We BOTH live here.  Why is it only my job?  I don't complain about being tired any more.  I have been tired since February 2014.  I've been exhausted beyond belief for the last three months.  I can't sleep through the night because I have to get up three times to pee, and when I get up, my brain doesn't shut off.  Baby hasn't even arrived yet and I'm pulling all-nighters while you push your huge comforter onto my side of the bed, where I already have limited real estate.

So you're tired?  Climb the damn mountain.  You'll know the real meaning of exhaustion then, too.

Sorry.  I know he's doing his best.  I can't fault him for everything.  But it doesn't feel like a nice thing to do the dishes when I have to force you into doing them.  I'd rather do it myself, when I know it will get done, and I know they will be clean, instead of having to redo them tomorrow when you're gone at yet ANOTHER camping trip with the scouts and I'm home alone.  AGAIN.  To clean and take care of the house.  AGAIN.  How the hell can I start nesting if you won't help me?  I can't keep up.

I'm tired.

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...

Picking Poison Again

Well, saw the neurologist on Friday.  Or, the PA rather, who is very nice.  Though it seems to be a running theme that people either never meet their doctor, or their doctor doesn't care - this is very frustrating.

I felt like they forgot why I was there.  The whole point of the last three weeks was because I had failed the first round of Solu-medrol, and had to be put on another dosage of steroids for over a week.  Then, we were going to re-do the MRIs, and start Tysabri.  When my JC virus antibodies came back positive (which they were weird about telling me, like I had HIV, which it is my understanding that the JC virus is common) - they had to scrap Tysabri, which was saddening as there is nothing as 'aggressive' at preventing relapses as that drug.

So we are back to the drawing board.

The doc wants me to get on medication ASAP, because the type of symptoms and lesions I have show that my disease is progressing quickly.  Not enough to reclassify me as anything other than R/R, but enough of a concern that we can't just wait to get me treated.  This really upsets me that I feel like I don't understand enough about my own disease to figure it out, and they can't or won't communicate that with me.  It is disturbing to me that when I move my neck forward I have tingles, noticeably worse tingles, running down the back of my legs for as long as I hold the position.  I have a stiff neck, but never had that before the last round of steroids.

This tells me that the likelihood of my failing the second round of steroids?  Might be pretty high.  I feel like crap, my numbness keeps changing in my feet - yesterday I could have walked on hot coals (or worse, loose legos!) and wouldn't have known it.  I don't have any set lesions in my cervical region, at least not on the last MRI, so why I have this problem when my neck is moved is just scary.

They are going to start me on Gilenya for the time being because I'm about to move out of state.  I just love getting guilt tripped by my doctor about how much of a pain in the ass it is because they can't get me started on daily injections if I'm about to move.  Gee, I'm sorry that where I got a job is a pain in the ass FOR YOU.  Here, let's switch places, I'll be the doctor that never meets her patients, and you'll be the broke brand-new AuD with NO MONEY, gross medical bills, and a condition that causes you to not feel your feet and numbs your hands - and you're supposed to move.

Again, sorry that this sucks for you.  But I'm the one with no place to live when I move, no money until I get paid 2 months from now, and a disease that is heavily affected by stress.  ::sarcastic thumbs up::

I ran into a very old friend who I haven't seen since my wedding five years ago - and I am so happy that she is someone I can trust and talk to.  She is getting her PhD at UNC (Carolina) and works in an Immunology lab, after transferring out of an MS lab.  I told her what was going on - she treated it like I do, very scientifically, and went off about a study she once looked at for T-cell receptors and myelin.  I'm so happy that she didn't give me the ridiculous pity look.  If I had seen her more often, I might have broken down in tears over the day's events and being chastised by my doctor for moving - but it's enough to know she knows if I need someone.

That's it for now.  Have to be on the 'weak' drug because it's better than nothing - the PA looked almost panicked that I still wasn't being directly treated.  Will have to hope my insurance will accept another round of MRIs.  And I'm not bringing mom to another appointment - I just can't right now.  Love to all. 

Qualifications

Well, my JC virus antibodies came back positive, which means I can't be put on Tysabri.

Oy, one big, fat, OY!!!

I am going to see my neurologist tomorrow and discuss some other options, though I don't know what will be suggested if Gilenya wasn't 'aggressive enough.'

Any thoughts?  Sorry for the short post, I will have more details tomorrow.
Love all - -

Just Keep Swimming

Okay, today I am trying to have a better attitude.

Let's face it, the last few weeks have been one big, bad, crapfest.  We're trying to see the light at the end of the tunnel, but right now we wouldn't be surprised if that light ended up being a train headed straight in our direction.  I keep having to move things around for work to get these treatments in, and we're just beginning this second round of steroids.

So, where do we go from here?

Well, you have choices.  You can choose to let your MS take over, and resign yourself to your symptoms and experience.  But I feel like I can't do that right now, because as interesting as it is to have a huge white spot show up on my MRI (see picture on blog web page at right), I am not having 'worsened symptoms' right now.  So I don't have that option.  I could also choose to let this scare me into not taking my California job, letting it interfere with my future, and let the fear disable me.

But I refuse to be disabled by my MS.  Until it takes my legs, I will NOT be disabled!  I choose to not let this take over me just yet.  I choose to have control.  I choose to move forward!

So, this means, I choose to make a list of things to do while at my infusion appointments.  I choose to keep looking for an apartment in California, and I choose to make plans to go out and make a decision.  I choose to not be afraid of the next two months, and I choose to have faith that I will be able to get financial help for all of the floodgates that are about to open on my little family.

Today I forced myself to make a choice to think positively.  I may feel differently on Monday after three days of Solumedrol.  But today, I will conquer!
- Margo

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!

Making Decisions

I decided to go with Gilenya.  I called my doctor to let them know so they might get the paperwork going; we set an appointment two weeks out - for this drug, I have to go in for an entire day to be monitored because of the potential heart issues.  It's the day after my birthday, FAN-TAS-TIC.

Right now, I'm struggling with the decision of telling people about my diagnosis.  You know how the internet is, well, a semblance of anonymity?  I have always been a very active person with social media, and I probably have way too many accounts to keep track of.  So there is something different about sharing this sort of thing online, on my tumblr and this blog, even on my art page and twitter.  I know about three "real" people from my life on those sites, and as may be clear by it's slight ridiculousness, I don't use my real name.

In real life, however, having a chronic illness can be very different and difficult to share.  You are not always greeted with sympathy or care; the attention one receives from this kind of revelation can often be negative, or a negative-kind-of-positive attention, I'll shorten it to 'NKOPA'.  What is NKOPA?  The kind of response that is overly sympathetic, like pity, or even the kind that is immediately drenched in suggestions.  As I stated in my first post, this is often declared in the form of what food one should/should not eat, or what deodorant one should/should not use.  My mother was quick to share it with extended family after I told her (which I did not ask for) and I then got a flood of emails about how I should 'cleanse my body of toxins' and things of the like.

The problem with these suggestions is that people are inadvertently telling you that you can prevent your problem, which in turn, means you could have prevented it from happening at all.  If I could have kept my legs from going numb by eating more grapes, I would have.  I would have drowned myself in grapes (and I don't even drink, haha!)  But that is not reality.  Science shows that many of these theories are invalid and anecdotal - which basically means that because everyone has a different 'flavor' of MS, you can't predict when relapses will occur whether or not someone has a particular diet or habit.

By the way, do you want to know how to tell if someone is Vegan?  Don't worry.  They'll tell you.

So today I am asking for some responses.  Did you tell people in your immediate circles when you got your diagnosis?  Did you tell anyone at all?  How did the people in your life respond?  I have basically only openly told the people I work with as it has seriously messed up my work schedule (see how now I have another MRI and a full day at the doctor's office ahead).  I would love to hear some real-life experiences of what you went through when you were first diagnosed.

Thanks all,  Margo

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