Tuesday, April 2, 2013

Not Just Clumsy

Katie Jennings

I was in my 20s the first time I tripped while I was jogging. I skinned my knee and my hands. I didn't think much of it. It was dark and I was running in an older neighborhood in Washington, D.C., with lots of cracked sidewalks and tree roots. It could happen to anyone. Right?

Over the next 15 years, there were many more falls. Sometimes while I was running, sometimes walking. Sometimes in very famous places (good morning, Grand Central Station!), sometimes on anonymous sidewalks in quiet towns. I never had any trouble making excuses for my tumbles – clumsiness, ice or too-high heels. I told my stories for sport at cocktail parties, laughing them off and inviting friends to join me in that laughter.

Two years ago, on a perfect October day, I fell again. This time it wasn't funny. I hit my face on the sidewalk, cut up my mouth and broke some teeth. I retired from running and found other exercises, but I was still chalking it up to clumsiness, even after a radiologist friend suggested there might be something more to it.

About six months ago, not long after my 40th birthday, I noticed that on long walks, my right foot was dragging a bit. Not enough to fall, but plenty to notice. I finally had reason to investigate further. I'm sure you can imagine what happened next.

My family doctor was stumped, and sent me to a neurologist. The neurologist put me through a series of tests and determined that there was nothing wrong with my foot or leg, but there was a slight weakness on my right side. He scheduled an MRI "to rule out" multiple sclerosis. I shared the news of my upcoming MRI with friends with concern, but not panic because MS is the kind of thing that happens to other people, not to me. Surely in a few months this would just be another good story to tell.

The appointment at which I received the diagnosis of primary-progressive MS was on December 12, at noon. (And I was late, so it might even have been 12/12/12 at 12:12. How about that?) My neurologist told me there were lesions, told me it was MS, gave me a lumbar puncture, and then left me to lay still for 30 minutes. Those are minutes that I’ll never forget. These have been months that I’ll never forget.


Suddenly, the future that I'd imagined for myself no longer exists. I need to begin creating a new one. In some ways, I’ve been forced to reimagine my past as well. All those falls: not just clumsiness. I’m 40, but I’m getting to know myself all over again.

The past few months have been scary, disappointing, stressful and dark. (And believe me, winter in Vermont can be dark dark dark even without MS specialists to see.) Surprisingly, they've also been joyful, reassuring and filled with hope and laughter. I’m just getting started, but I look forward to sharing more about my journey with you here.


Katie Jennings keeps busy juggling a son, a husband, a job, an old house, a bossy cat and unpredictable Vermont weather. She was diagnosed with progressive relapsing MS in December 2012. She blogs about all of it here: http://steadyshegoes.com.

19 comments:

  1. just wanted to say "hi" I am Gail, from Clinton, CT. I added your blog to my list f those I follow. I have a blog too if u r interested. It is not all about MS. Some of it is. I was diagnosed in 2004. Had episodes long before that though. Anyway, nice to "meet" you. Stop by some time.
    Luv Gail
    peace....

    ReplyDelete
    Replies
    1. Thank you for your message, Gail. I'll definitely stop by!

      Delete
  2. Katie- Thank you for your courage to share your story! By sharing your story, you are helping us all understand that we are not alone.

    ReplyDelete
    Replies
    1. Getting feedback from other people in similar situations helps me just as much. Thanks for your thoughts.

      Delete
  3. Katie, your story is all so familar. If I had sat down and wrote what was going on in my life, it would have been the same. Although, there were and still are times people think I am drunk, and I do not drink. Just have to laugh sometimes. I am now 50, and was diagnosed at age 36. It is so nice to hear that you have already taken the path to accept your diagnosis and move on with your "new" life. That is something that took me way to long to do. I spent too many years feeling alone and unable to accept my "new" life. May God guide you and uplift you during this time, and thank you for being such an inspiration to others.

    ReplyDelete
    Replies
    1. Karen, thank you! I hope you continue to find ways to laugh as well.

      Delete
  4. Hi, I was just diagnosed in June of 2012. I was a month away from turning 26. I hid my hurt in fear of scarring and scaring my family. I had questioned everything (why me? how could this happen? etc...) I didn't have any falls (that I can remember), but my symptoms were more with my vision (doubled), my left eye would jump uncontrollably when I looked to the left, dizziness, hallucinations, during the attack stumbling into walls as I tried to walk to the restroom, etc. I was scared... I thought that I had a tumor on my brain (seeing as my uncle was dealing with brain cancer at the time, may he rest in peace. They did the MRI, blood work, and the lumbar puncture ( I would not wish on my worst enemy). The results came back to indicate that I have remitting and remission M.S. I had 1 lesion on my brainstem, a cyst on my pineal gland, and an empty pituitary gland. Oddly enough, I also have 15 scars between both of my eyes... Through out that entire 1st of my 2 attacks I have had, I found a newfound faith in God. I do not question anything anymore and only want to speak about my disease to bring awareness to others that may be having symptoms. I have done a lot of research... including watching videos of people that record their progression and attacks... It is a little scary, but I am the person that wants to know what I am looking for. Thank you for being outspoken and bringing light to the people that may be having the symptoms and associating it with clumsiness. You can look me up on Facebook if you would like. My name to search is Jessica Argo Stewart and my picture is "Orange is the new Pink" ;) Look forward to hearing from you.

    ReplyDelete
    Replies
    1. Jessica, I'm glad you're finding the positive in all this as well. Good luck to you!

      Delete
  5. Thank u Katie

    My son has MS was Diag on his Birthday last March...He is 34yrs old now..
    I just wanted to say Hi your Story has many of the same things that have happen to hi though his life.We went to see the Dr in Feb 2012 because of all the falls he was having...They sent hi for a MRI and the rest is history..Though out his life he was a Clumsy child ..I just thought it was being a very active Boy..He was in all kinds of sports..He also told the Dr about a day he had when he was 18yrs old that he could not walk and had to sit down and wait I never knew that happen to him..So when he came to me last year I made him see the Dr..Who has told him That he can no longer work any more...So now we are waiting again for him to be approve for SSD and to me he is y baby and just to young for this to happen to anyone..Good luck on Your with your health May god be with all of you ...

    Thank u for sharing your story :)

    ReplyDelete
    Replies
    1. Thank you for sharing yours as well. Best wishes to you and your family.

      Delete
  6. Thank you for sharing. Our stories are very similar. I was diagnosed with primary progressive MS in 2007 after a series of falls that I at first assumed were just because of my general klutziness, but after a more serious one and a tortuous few months of testing I was finally diagnosed. I am also facing a future that is completely different than anything I had planned or imagined. Hang in there and we'll stumble along together until they finally "fix" this! Even though some days it is nearly impossible, it is still better to laugh than cry!

    ReplyDelete
    Replies
    1. Hi Katie,

      My name is Mojgan. Thank you for sharing your story. I was diagnosed with relapsing remitting MS in year 2000 but the problems started when I was 14 years old. My condition has slowly progressed to secondary progressive MS. All of us sharing the same story. I turned 40 in January and have lived with MS for 26 years. I learned so much in my adventure with this disease. Future is not clear yet, but I try to make the best out of what comes for me.

      Delete
    2. Hello,
      I'm not sure what's happened to me but your description rang bells.
      After 3 years of being told that my physical symptoms of unsteadiness, speech & memory problems, were depression, despite clear signs of bowel & dental infection, a GP finally sent me to a neurologist to shut me up.
      The neurologist sent me for an MRI head scan and said the white matter lesions could be seen in many people my age. I'm 63.
      Six months later he's written to my GP to say that on review with a radiologist, it's been suggested that the white matter damage could represent 'nerve inflammation' & I should now go for a lumbar puncture.
      When I asked my doctor what would be the purpose of the LP, he crossly stated that the neurologist wanted to confirm Multiple Sclerosis, as he shooed me out of his door.
      That was the first time I'd heard those words mentioned.
      Our local hospital is one of the most notorious for hospital acquired infections and I don't feel any confidence in either the neurologist or the GP's advice.
      In the last 6months, I've lost quite a lot more mobility and strength and I'm reluctant to take the risks of a LP for no clear benefit to me.
      Do I need a firm diagnosis or is it better not to know for sure and hope they're wrong again?

      Delete
    3. Persia,
      My name is Staci. Your story breaks my heart. I am a firm believer that, if you do have MS, the quicker you start treatment..the better. I am praying for you!

      Delete
    4. Hi Persia, I'm so sorry to hear about the roadblocks you've been running into with the diagnostic process. If you'd like more information about MS, diagnosis, lumbar puncture or a list of neurologists for a second opinion, you may want to contact our information resource center (800-344-4867).

      Delete
  7. Thank you so much for your story. My wife was dx. with MS in Nov. of 2011. She is having a very hard time with ALL the things associated with her life now since her dx. She can relate to your story of life long "issues" just playing them off to clumsiness, or "I'm just always sick". With stories like yours she is starting to realize her disease and how to reform her life with it.

    ReplyDelete
    Replies
    1. Thanks, Shaun. I wonder if she found some measure of relief in at least knowing what she was facing. I've been trying to be grateful for that, among other things. My best to you both.

      Delete
  8. Hello...Barbara here. just finished reading and pondering everyone's stories. Mine is blessedly unremarkeable....dx 10 years ago with only an MRI. NO LP! okay with me! :-)Life can be good! Just move forward, one step at a time. Literally. Strap on those sexy cement shoes and go! (okay, they only feel like they're cement some days!)

    ReplyDelete
  9. Hello... My name is Jessica. I was diagnosed with Relapsing-remitting MS when I was 19 I am now 22. Your story was very touching and similar to my own. Thank you for sharing and I wish you the best. I have a blog as well if you all would like to visit.

    The Fabulous Life with MS
    http://thefabulouslifeofj.blogspot.com/2013/04/adjustments-if-youre-going-to-limp-limp.html

    Through my experience I have learned that everything in life is a decision; and I decided that "MS Won't Stop My Groove!" Please don't let it stop yours!

    ReplyDelete