To MRI Or Not To MRI….

In the past 3 weeks I have finally been feeling almost back to my old self. Spending time with my husband and son, laughing, sitting up and most days pain free. Thanks to a doctor whose sister had MS and understands completely what I’m going through. So when I woke up last week from a nap and couldn’t move my right arm, I came up with every excuse I could think of. Something MUST have fallen on it while I was sleeping, I was imagining it, I must have slept wrong. Right?? Three hours later, I was pretty sure a ghost that MUST live in the house, did not sit on me while I was sleeping and this was an attack of some sort.

The phone call to the MS Center in St. Barnabas is pretty routine these days. Nothing to these nurses “seems odd” it just comes with the territory. So, these symptoms would require an MRI and some blood work to check my white count that has been hanging around for a few months, of course with out explanation.

Should I or shouldn’t I? I have been feeling so good any bad news from this MRI might throw me back in the hole. You know the one, that you crawl out of from time to time. And I had just come from the bottom of the pit. The lowest point possible. I’m pretty sure I saw #Lucifer.

To properly explain where I am today I have to take you back to where this attack began. From March of 2011 I still have not been back to full capacity. I tried for a while to hide it, and explain things away I think more for other people than myself at first. I refused to give in to this thing, then.

In 2012, a few months of just existing, seven different pain or muscle relaxers and a neck surgery later, in August, our vacation was approaching.

Usually, I’m packed and ready to go a month before, but when the day we were leaving, I was still dragging my ass trying to pack, should have been my first clue. Heat is not good at all for someone with MS, but as you know, this did not apply to me. In tears, I got in the car for the trip to Savannah, St. Augustine and Disney. I tried my hardest to put on a good face for my family, but my body was failing me. There were more breaks this year then last year, more pool time to get out of the heat, and more hours in the room while the guys went out.

When we hit Disney, I was way to proud to use a motorized wheel chair. Not at my age, no way! So in the middle of Epcot (the countries) in 115 degree heat, when my legs could take no more – my husband and son held me up on the long walk back to The Boardwalk. I showed them. Right? #stubborn

The journey home from #vacation2012 is a blur and so are the next few months.

Each day turned into the next without me noticing. My sons first day of High School, something I waited for since his first day of Kindergarten is a non-memory lost in a blur of pain and depression as different parts of my body stopped working.

The lowest point was missing my Grandfathers funeral because we were not as of yet equipped with a wheelchair or was I even able to sit up for periods of time and breathe properly. I couldn’t add more stress to my Dad that day, so I stayed home and my husband paid my last respects. I said my goodbye in a private way.

Halloween, Christmas, New Years passed and I was now using the walker I detested. The amount of weight I have put on was just another wonderful side effect of meds/non activity. The new blue and silver wheelchair was my only way to leave my house and be transported to Dr. Appointments. A nice man from JFK home physical therapy came to visit, but it was determined I was to sick to participate. It would add more stress to my body.

I was losing all hope that I would ever feel normal or look normal again. My marriage was deteriorating along with my limbs. I was pushing everyone away. It had been a month since I had spoken to anyone on the phone. I cut off all visitors, except the cleaning service. There were days that I would hope to die, and then make a deal with god that I didn’t really mean it. Tears were a normal part of my days and nights. Wishing for just 24 hours of no pain.

And then something changed about a month ago. It was almost like a black and white movie changed to color. I sat in the living room and John and I talked for hours, my son was so shocked to see me sitting there, It took him a minute to register.

Our upcoming move to Maine did not seem so daunting, I was excited. I started to have emotion again. Laughing was so foreign to me that for the first few days my cheeks hurt. It felt great.

Which brings us to the arm incident and MRI.

I’ve never been nervous for an MRI, but this one terrified me. Somehow I knew things were going to well. So when the phone rang the next day I was pretty sure this was not just a courtesy, “hey you did a great job laying still for an hour and a half – Good Job!” It was more like “Are you sure your arm is your only symptom? You can’t think of anything thing else?” Pure panic sets in at this point in the phone call. Even if there was something I sure just blocked everything else out but that question. “Kelly, there is a large active lesion on your spine, we need to see you right away.”

So far my arm strength has return to somewhat normal and I’m feeling ok. I’m not sure what will happen in the next few weeks, if anything but mentally knowing you have a ticking time bomb in your neck can screw with you – if you let it.

PS: We’ve ordered the motorized wheelchair for vacation.

So, to MRI or to not MRI….

I have also started a support group that is really helping me while I’m feeling well, and hopefully will pull me through the tough days. MS Information and Support on Facebook. And I would recommend having a blog just like this one to connect with others! Here is mine.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (4)
  • Musicang
    5 years ago

    Thanks for sharing Kelly! I actually connected through your post on My MS Team. I am finding myself everywhere for inspiration. Spent yesterday with my PCP and then in the ER where I was suppose to be admitted for hydration. I needed a break from home my PCP and I decided, so I could recoup from infection and figure out what was going on.
    Wires got crossed and her partner that was suppose to admit me never did. My neuro… don’t think he gave a rats patooty! The PA in the ER was awesome and very knowledgable. Gave me a great med cocktail, but, since no one claimed me and the ER was slammed. Home I was sent.
    PA nudged me toward choosing a new neuro. I love my PCP and I should have called her answering service from the ER. She moved her practice, but it is worth the distance to me. She listens and cares.
    My mother (who also has MS) hopped a plane today! She’s coming to help take care of my kids, and I’m afraid light a fire under my husband’s but with sugar. I don’t know. My relatives that live here and have enough problems of their own sent word her way! I just hope everyone remains calm. I can’t handle “the help” causing me stress!
    I hope you are on the upswing still! I thought I was until 2 weeks ago, and I’m going to try my darnedest to get back up, literally and figuratively!
    Best of Luck to you and yours!

  • wheels460
    5 years ago

    Haven’t had an MRI in eight years it was just to depressing waiting to find out if my disease has progressed. I hope you continue doing well it’s challenging to stay upbeat with this disease.

  • Laura Kolaczkowski
    6 years ago

    Hi. In your story I didn’t catch if your doctor offered you any disease modifying treatment to try to slow/contain the progression of MS? You’re in a tough spot now and I wish you well in this next phase. Thanks for taking the time to share this here – as you know it’s hard to get into the meat of the story in the brief bits on facebook. I hope we see you around and good luck !!

  • Kelly author
    6 years ago

    Hi Laura! Thanks for replying. I was on Rebif in the beginning and had a Neuro who just wouldn’t budge on letting me make the choice of stopping. My depression and side effects grew to a point that I was left with no choice but to tell MS Lifelines about the side effects and the company stopped the drug.

    I finally found the specialist at St. Barnabas and we were set to start Aubagio 2 months ago, but I have several different health issues at the moment that are preventing me from starting it.

    Once I’m settled in Maine and visit St. Barnabas there I will continue with treatment with the Meds.

    Thanks,
    Kelly

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