Wednesday, March 28, 2012

MS updates FYI

I do not know what causes MS.  My Neurologist doesn't know what causes MS.  One thing that can be agreed upon is it is a very strange disease, and affects all people who have it in vastly different and strange ways.
As many of you know I was diagnosed with MS in November 2010.  Really, my Doc has been calling it "nonspecific demylenation disease, probable MS"  But he leans 99% in the direction of MS.  There is no "test" to determine if you have it.  If you get lesions on your brain, and they get worse over time, and you have odd neurological symptoms that can't be explained by some other cause; it's probably MS.  So that is where I have been for the last year and a half.

Every time I have an MRI, there are slight changes in my brain, new lesions have appeared, but are small.  (go figure- I have 5 kids.  I'm surprised my brain hasn't turned to mush)   Thankfully these changes haven't been huge, because if they were, that would mean my disease is progressing rapidly and I would have to take serious meds.  I haven't had to have an infusion of Solu-medrol since last spring)  This is a blessing because high dose liquid steroid being injected into your veins over the course of 5 days is no fun, no fun at all. 

I write this post because recently I have heard learned that a few more people I know have been diagnosed with MS.  Which leaves me to wonder some things. 

Is MS becoming more prevalent or, is a clearer diagnosis being made because of technology?  Who knows...

When I was first diagnosed and was without any treatment, I was miserable!  I could hardly walk, I stumbled around.  I fell almost every day, usually in the shower because I had NO balance when I closed my eyes.  It was really scary.  I felt like I was groping around in darkness.  I sought answers, but there were none to be found.  My legs and feet burned like they were on fire, they felt like they had needles in them, and they were numb- all at the same time.  Odd, I know.  I was also very tired, like pregnant tired.  If you're a man, you can't relate.  If you're a woman, you know exactly what I mean.  My face was numb, my tongue was numb, I had times when I couldn't see out of my right eye.  I was all around bad off. 

Sorry if I'm giving you a sob story, I don't mean to.  I became very depressed.  I am not a naturally depressed person, so this was a big change for me.  I began to be consumed with MS and how it was taking over my body.  I worried constantly about the kids- and being in a wheel chair, or having to use a walker- or not living a 'normal' life, etc... the list went on.

Stress is a huge factor with MS, it is unclear why.  So we decided to send the kids to private school rather than the homeschool/charter mix we had been doing.  I started eating better.  I never really ate poorly, but I started incorporating more whole foods into my diet.  I tried numerous medications to alleviate the burning/tingling/numb symptoms- none of them worked.  Josh even researched medical marijuana.  He was desperate to find me some relief.  (I know, I know- many of you might guffaw at such a thing, but you don't understand the pain)  No, I am not using medical marijuana! 
Just to be clear :) 

I had been a runner before MS, but after MS took over I could hardly walk- let alone run! Now, not only was I dealing with this issue, I didn't have my outlet of running, which I loved so much. 

Okay- this is getting too long and boring.  I'll wrap it up.  I'm doing much better. Last May I started taking an anti-seizure medication which my neurologist recommended. (Josh made me go to the dr. because I fell when we were visiting his grandparents and it left a knot on my head the size of an egg) I don't know why it works- but it does.  This medication blocks neurological impulses...I guess that's why it works!  I still don't have feeling in my feet or ankles, and really hot water feels cold to me,  but I no longer fall all of the time because I have better balance.  ( I think b/c of the medication) I joined the YMCA because I was afraid to run on the road (I might have gotten hit by a car with all of stumbling around!)  I just couldn't sit around and let MS destroy me.  I got stronger, I commited to working out at least 3 times per week. 

November of 2011, Josh and I ran a half marathon, I am working out about 4 or 5 times per week, and we plan on running the Mini Marathon in May. I always feel like I have the flu. I am still fearful, but I will continue pressing on.  I don't think I'll ever regain what I've lost.  It feels as if my legs and feet are always waking up from an epidural (again- if you've never given birth & had an epidural you can't relate) it's kind of like the feeling you have when you wake up in the middle of night and realize you can't feel your arm because you've been sleeping on it in a strange way.  You frantically try to wake it up in your sleepy stupor- only mine won't wake up. 

I have learned to run this way though.  I just count it out- like I'm in boot camp or something.  One-two-three-four..That way I don't lose step & don't stumble.  I think I count more than I'd like to admit- but hey, at least I'm not laying on the couch watching soap operas and complaining about my MS.

But I do realize there might come a time in my life when I will not be able to walk on my own.  And that is very scary. But for now, I will continue to live my life- and thank God for the tremendous blessings that He has given me. 


  1. Isn't it so amazing how God has a way of putting everything in perspective for us? Everyday we have all these little problems, then something hits us, and we realize how petty our little problems are. I know exactly how you feel. I was in horrible pain for many months. I really felt like my body was falling apart. When I found out I had cancer, it frightening and a huge relief. I wasn't insane! I have been cancer-free for 2 years 9 months. God showed me that I needed to let go of all the stuff that stressed me out and pushed me away from Him. We are all so very fragile in this life, but often it takes something very painful to teach us that lesson. The issues I still have with my body are my little reminders everytime I lose focus on what's important.

  2. Thank you for the update, Sarah, I was going to ask, but I didn't know if you wanted to talk about it.

    I'm glad you found something that is somewhat helping your symptoms. I can't believe you continue to run, you're one tough lady:)

  3. Kyla- Tami told me you had cancer...praise be go God that all is goin well for you. The Lord puts things in our lives to refine us- we might not understand why, but there is purpose in everything!

    Alice (ma) don't be afraid to ask :) I've been on the down-low because I've been feeling ok lately. We still need to get together and talk about some things. We're on Spring Break this week, so if you guys are available, I'd love to have you over. It would be fun! Let me know... Josh's cousin is coming to visti from NY on Thurs, so we are free Mon, Tues, & Wed.