My MS Journey: Part 1-First Symptoms to Diagnosis

Hindsight is a funny thing.  I distinctly remember the first time I was aware that I may have multiple sclerosis (MS), but looking back, I see things that tell me I had it before that.  Then there is the question of, Did I have what's known as Walking MS (a form of MS where there are no symptoms) before that?  That question I cannot answer.  Nor is it something that I worry myself over.

I can tell you that I'm pretty sure I had it while I was pregnant with my middle son in 2005.  I had an epidural while I was in labor with him in December of that year.  Which, just like with my first-born, didn't work very well.  A week later, I noticed the numbness in my left big toe was still there.  Eventually, I just "got used to it" and ignored it, but it was always there.  I think I mentioned it in passing once in a rare while to my husband.  Also, as with my oldest, I had the postpartum blues.  The depression went away after a couple of months, but the mood swings stayed.  I became extremely irritable at the littlest things, and I took it very personally when my oldest was disobedient.  I became a full-fledged yeller.  It didn't take much to set me off.  While I didn't like it and knew it wasn't who I really was, I chalked it up to hormones and being a mom, especially a mom of two now.

Fast forward to August 2006.  I contracted a summer cold that lasted about three weeks.  While I was still recovering, I felt a tightness in the skin on my forehead, almost like I was sunburned, even though I wasn't.  Then, I realized I was only feeling this way on the left side of my forehead, and even my face.  The next day, this feeling spread throughout the entire left side of my body.  It was then that I realized the feeling I was having was that numb, tingly feeling you get when, say, your foot falls asleep.  Only, this was everywhere on my left side.  My husband, worried I was having a stroke, took me into the doctor.  After listening to what was going on, the doctor had me take a glucose test.  I had gestational diabetes when I was pregnant the previous year.  Since I hadn't yet went in for a test after giving birth, she checked my blood sugar, and it tested fine.  She noticed I was still stuffy from my cold and asked about that.  That's when it clicked for her.  She said that sometimes a viral infection will cause numbness.  Since I was sick for so long, we concluded I must have had a sinus infection.  As we were concluding the visit, the doctor said, "Now, I don't want you to freak out, but if you look up numbness and tingling online with your age and gender, you will get a ton of results for multiple sclerosis.  I just have to tell you that because there is a vague possibility that this could come from that.  Right now, though, it's much more likely it's from being sick."  Now, before you knock that doctor for not testing more, there was no way I would have been diagnosed at that time anyway.  With just the numbness and tingling for a couple of days, coming off of a likely sinus infection, it wasn't even enough for them to order an MRI at that point.  In order to diagnose MS, among other things you need to have more than one episode happen.  We left the doctor that day, the numbness started going away within a week, and in two weeks, was gone completely.  Except for that left big toe.

And then, we come to November 2006.  My oldest was 5 and my then youngest was just a month shy of turning a year old.  Nick was getting ready for deer camp.  He was very excited, because this was the first time he would be up there for a whole week instead of just the opener weekend.  As usual, it was a teary good-bye for me (it still is, by the way...I'm definitely not one of those wives who is excited for their hubby to leave).  But, everyone was healthy, and we had everything we needed to get by for the week.  I had things planned to keep us busy, and was looking forward to "mommy and me" traditions I had started with my oldest, and now carrying on to the next as well.

My husband was barely gone a day, when the numbness started coming back, on the left side of my body again.  I hadn't been sick at all recently.  Within twenty-four hours of noticing the numbness, the entire left side of my body was numb, and the right side of my body was very weak (including drop-foot with the right foot).  For lack of wanting to go into details about other things that were affected, let's just say it's unfortunate that we did not have a bathroom on the main level of the house.  My coordination when I was trying to type became horrific, and I became so weak in general that I couldn't even lift my eleven-month-old son out of the playpen that I had put him in for his nap a few hours before.

I was in tears within minutes of starting my Google search.  I tried to find other, "easier" answers, but I knew deep down that I was having an MS attack.  I called my husband in tears, telling him what was going on.  He wanted to head home that night (it was evening when I called him), but thankfully, his friends talked him into getting some rest and heading out first thing in the morning.  That night, I had to hold my baby in my lap and scoot backwards up the stairs on my behind to get him to bed, as I was so scared I would fall with him.  I put his crib rail down and my five-year-old assisted me in getting him in there.  After making sure everything was set and secure for the night, I didn't even have time to cry as I fell almost immediately into an exhausted sleep.

When Nick got home the next day, we got someone to watch the kids and he took me to the emergency room.  There, they did a CAT scan as well as some nerve and sensory tests.  The scan showed nothing, but the nerve tests (along with all my symptoms) concerned the doctor.  They scheduled me for an MRI in two days, and then for an appointment for a neurologist for when the MRI results came back.  Within a week, we were sitting at the doctor's office, with the neurologist explaining the MRI films to us.  There were three lesions on my brain.  On the outside, I remember being very matter-of-fact, but on the inside, I was an emotional basket case.  She explained that MS was a possibility, but that they would have to do other tests, including a lumbar puncture, to rule out other less likely possibilities.  They did blood work that day and scheduled the dreaded lumbar puncture at the hospital for, I believe, later that week.

The lumbar puncture was by no means fun, but when it was all said and done, it wasn't really that bad.  They made me lie around in a hospital bed half the morning waiting for my spine to "relax" enough.  HA!  The anticipation that came with that waiting was actually a lot more stressful than the procedure itself.  Just don't ever quote me as saying I would be happy to do it again, okay?

Needless to say, I got a call within a week that the lumbar puncture confirmed what the other tests indicated.  That I did, in fact have MS.  In fact, I had and still have Relapsing-Remitting MS (RRMS), which means that I have flare-ups of symptoms that for the most part, go into remission, then flare-up again because of any number of factors.  In the two months from that November flare-up until I could get on an MS-modifying medication (and including the time it seemed to take to kick in), I was having a flare-up (also called an exacerbation) every other week.  They'd give me steroids, I would get better, then the next week, it would start up again.  It was definitely a time of emotional ups-and-downs, too, and not knowing where this was going to go.

If you've made it this far, thanks for reading!  Another day soon, I will post part 2 of this journey, what happened after the diagnosis.

It's been awhile...

Yikes, it's been awhile since I've had time to sit down and blog.  I'm finally feeling better after a couple of months of different ailments.  The medication I'm taking for the MS weakens my immune system so that it will slow down it's attack on itself.  In the meantime, I have been catching anything that comes my way.  Since Christmas, I have had either a cold or upper-respiratory or some other infection.  Each time that happens, I get mock MS symptoms, most of all, FATIGUE.  And the neuro can't give me anything for that while I have an infection, because they don't want to weaken my immune system even more, or I can't fight the infection.  So it's kind of a catch-22.  Finally, I was healthy enough a couple of weeks ago to get a 3 day steroid pack for the MS stuff.  It worked wonderfully, except for the FATIGUE.  I wasn't even getting the basics done.  Finally I talked to my neuro about it, and she gave me Amantadine.  I've been on half-dose for 2 days, and so far, it's working beautifully. Although, I have 5 more days to make sure no side effects pop up, then I can go to full dose.

So, yeah, my routine has definitely not been kept up the way I would like to have done it.  But, I decided to simplify a little.  Now, everyday, I want to at least keep up on dishes and laundry, keep things picked up in general, spot-sweep floors, and spot-clean bathrooms.  I'm assigning a different section of the house for each day of the week:

Monday-front entrance, hallway, and dining room
Tuesday-kitchen (my favorite!)
Wednesday-bathrooms and one other room (which could be laundry room, one of the kids' rooms, the guest room, or part of the basement)
Thursday-master bedroom
Friday-living room

Whatever needs getting done in a room, it will be done on its assigned day, whether it be de-cluttering, deep cleaning, dusting, vacuuming, or even a decorating fix.  I have to be very diligent with this, because even today, I got the living room all done, and wanted to move on to other rooms.  When I do this, I burn out, so I made sure the basics were done everywhere else, and just enjoyed being in my nice, shiny living room!

Wow, I even made my first real dinner in a long time (one that wasn't thrown together with a lot of convenience foods and last-minute decisions because I hadn't thought about it all day) of oven-fried chicken, mashed potatoes & gravy, veggies, and pickled beets.  I even made a simple dessert of black cherry jell-o and whipped cream to boot!

It feels so good to finally feel like things are getting back under control on the home-front.  We have been keeping up on school the whole time, as that is high on my priority list.  We are almost 20 days in to first grade with V, and he is doing so well!  And we are both having so much fun with the curriculum!  For now we are doing Mon-Sat as that pace will get us done in time for fall, so we can start second grade then.

Before you fall asleep reading my novel, I will close for now.  LOL!

A tough diagnosis, and a simpler life

Well, I am in the process of being diagnosed with multiple sclerosis.  While this is tough to swallow, I will NOT let it get the best of me!  It has been a rough week of testing, including an MRI, bloodwork, and a lumbar puncture, but it is over and hopefully we will have a definitive answer at my neurologist appointment next week.

The good news is, this has really made both Hubby and myself take a good look at how we're living.  We have both agreed that we need to MAJORLY de-clutter our home and simplify our lives.  This is great!  I have always wanted to do an overhaul, and have done some de-cluttering here and there, but Hubby  has always been wary of getting rid of stuff, so I never did anything major.  He is in the process of clearing out a nice big area in our basement to put things for our garage sale next spring, so we are already off to a good start.

I did try and start on the kitchen today, but that was brought to a screeching halt when the shelf broke in the cabinet I was de-cluttering.

The support on the left side broke and it fell down.  Hey, I was trying to take stuff OUT!  LOL.  Ugh, looks like I need to scrub it down, anyways...I guess all things happen for a reason!  I had V take all the food out and I tried to group it so that I can just stick it all in right when Hubby comes home and fixes the shelf.


Oh, and my kitchen table's a mess too...


These are some of the things I found that either I'm going to use today, or move to the fridge.  Why haven't they been moved there, you ask?  WELL, the fridge needs to be cleaned as well...




Okay, and the dishes need to be done...


V (5) loves to balance things precariously when putting them into the sink.  Anyways, what am I doing on the computer???  Now that I've thoroughly embarrassed myself, I better go make it so that I can post nice pictures too!

More updates soon...