When Spasticity Strikes Back

Well, it has been a thankful long time since I have felt a need to update my MS blog.  Things have been generally well.  I quit the job at the sinking ship.  I have a new job which will allow me to run my own office very soon - 2 weeks from now, in fact.  I won't need to commute from home to work any longer.  My daughter is beautiful, smart, and a joy.  My husband, despite being left to watch her for several hours as I commute and while I attempt to have a life as a working mother, has no plans to leave me :).


Well, as the weather has proven in the past three weeks in Northern California, it has been bloody hot.

It began about three weeks ago with a particularly hot day.  I noticed when I put my baby in the bathtub that as I bent over, I felt the ever-familiar Lhermitte's sign tingling in my feet.  It has been about a year since I felt it, briefly, after a long walk.  I felt it again and again, every time I moved my head, for about three or four days.

Then, the numbness returned in my legs.  Only in pieces, though.  Not enough to really raise any red flags.

I had an MS hug earlier this week - started on my left side, tightening beneath my ribcage, then slowly spreading around the front to my right side.  By the time I went to bed, I wasn't able to take a full, deep breath without pain.  But by morning, it was gone.  I figured all of this was due to the heat.

Well, tonight while we were in the grocery store, my husband and I were teasing each other.  I specifically remember him poking at my bottom when I suddenly felt a sharp tug in my left foot.  It was a cramp.  I figured, no big deal, it's just a cramp.  But it didn't go away - I had to stop, take off my shoe, and try to massage my foot (in the middle of the store, no less) while I watched my second toe contort as if it was out of place.  The muscle contraction was so strong it was moving my toes from the ball of my foot forward!  Oh, man, it HURT!   I know I seemed like a baby to him, but after five full minutes and no let up, it felt really scary.  I couldn't walk on it.  I hobbled around one aisle looking for a single item when I gave up and told him I was going to the car.

As I limped out of the store, my left foot started to feel better.  However, I was cautious.  I called my sister as I had to talk to someone other than my husband, who I am certain thinks I am blowing this out of proportion (I'm not).  And guess what?  Just as I was looking for my car, dammit if I didn't get a bloody cramp in my other foot!  Akkk!!!!  I felt like I was being attacked by my own feet.  I got in the car and just sat still, massaging my feet and hoping the cramping would stop.

Since we got home, I have been trying to keep off my feet, literally.  I am worried that maybe it was my shoes, maybe it was just how I was walking.  I feel literally scared of walking right now.  I'm afraid if I put weight on my feet, they will spasm.  So I am holding still.  My anxiety over it is making me walk funny, which I fear will mean I will sprain something.  Every time I walk up my stairs, I get a sensation of early cramping in my foot.  I am now hating my husband for wanting a house with stairs when I told him a ranch style might be better for my future.

And, I understand better why it may be a good idea to get a handicap placard if it ever happens again.  Walking across the parking lot (hobbling, more like) was embarrassing and I just wanted to get to my car.

MS fucking blows.  And I was doing so well!  Fingers crossed that this was a one-off.
Love, 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

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

T Minus...

I'm giving it until Friday to see if things improve.  T

here is no way this is just pregnancy; it feels too much like the first time, though less severe, which is a good thing I think.  I can still walk, but I definitely feel more unsteady, despite the fact that my legs feel fairly normal.  The numbness is moving around my feet throughout the day; at night, it's the worst, waking me up and making me panic.  In the morning, after walking around, I feel ok and barely notice the numbness.  By noon, it's starting to bother me again, ebbing and flowing.

Now it's about 8:15, I have had a very rough day at work, my crazy mother was set off again today and I'm getting hate mail, and my feet feel very funny.

Here's to hoping I can feel them by Friday.  If I can't, I will have no choice but to call my neurologist.

And I knew when I went to bed on Monday that my toe felt funny.

MSloan

Relapse?

Hey all.  Today has been an interesting day.

After making such a big, stinking deal of being happy that being pregnant reduces MS relapses, I seem to have forgotten the operative word:

REDUCES.

It doesn't eliminate relapses, and I woke up this morning with no feeling in my left toes, and none in my right big toe.  I don't know if this is my MS or if it's somehow related to my pregnancy, but I feel like an idiot!

More updates to come - Love all!