My story…or, why MS sucks

MS Awareness Week is fast approaching.  This year it’s occurring March 2 – 8.  And sharing my story is something I’ve been thinking about for a while now.  Yes, I have Multiple Sclerosis.  It’s not something I hide and I’m always more than happy to share information about it.

My story actually begins with Dad in the early 1970’s.  At that time Dad was diagnosed with Transverse Myelitis, a form of MS.  Transverse Myelitis is defined as “a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transversesimply describes the position of the inflammation, that is, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.” 

Then it went away, or at least that’s what I thought as a young child.  After all, Dad was fine.  He was able to play with us, he went on bike rides with us, taught me and my brother how to catch a ball.  Then 1987 rolled around.  That fall is a time in my life I will never forget.  That was the year my Minnesota Twins won their first World Series.  That December was also when my Grandma went into the hospital with failing kidney’s.  While Mom was spending as much time as she could at the hospital with Grandma and Grandpa, Dad was going through testing for MS.  I can honestly say I don’t remember there being any symptoms.  I don’t think Dad ever let on that he was having any pain or numbness or any other problems.  I just knew that he had to have tests done.  And I knew that he had to have an MRI and I later found out he had a lumbar puncture done. 

As the years passed there were a few times Dad had to take FMLA.  Those times usually also meant he had to be on IV steroids to help reduce the effects of the flare ups he was having.  Dad’s MS tends to affect his legs more so it’s always easy to tell when the MS is bothering him, when he’s having a flare.  Or, even when there’s just a cold front coming through.  Some of Dad’s flares have meant he’s needed to walk with the aid of a cane.

As I went through Middle and High school I did some basic research regarding MS.  I was aware that while MS isn’t directly inherited the same as say blue eyes, there is a genetic predisposition.  What does that mean?  It means that I could have inherited whatever genes cause MS, but I may never had actually gotten MS.  And Scientists still don’t know what causes MS, although they have identified some genes that are involved.

So what’s my story?  October 28, 2006 to November 4, 2006 J and I joined my parents on a cruise.  We had a great time on our first vacation together.  At that time we had been dating 8 months and I knew that this guy is amazing and there was no way I wanted to let him out of my life.  We came home and the following Friday, November 10th, I woke up with some numbness and tingling along the outer edges of my hands and the outer edges of the bottom of my feet.  As the day progressed the numbness spread.  I knew I needed to see a doctor but the big question was what kind.  I didn’t have a primary care physician, I still don’t to this day, so did I look for a general practitioner?  And then pay my cost to see them only to be sent to a specialist?  Or did I start with a specialist?  After thinking about it I decided to just skip right to the specialist.  I figured that since I was experiencing numbness that would mean even if it wasn’t MS (which I admit was a thought at this point) it was probably something nerve related.  So I looked for a Neurologist. 

The first one I called coudn’t get me in until the following Thursday.  I went ahead and made the appointment, then called another one.  This doctor could get me in a day earlier, so I switched my appointment to him.  The office faxed me all the initial paperwork to fill out and one of the questions on the questionnaire was “Does anybody in your family have MS?”  I also have to say, one of J’s really good friends used to work in the front office for my Neurologist.  She is a very open, outspoken person and she had nothing but good to say about this doctor.  I found this out after I made my appointment and it made me feel like I picked a good doctor.  A feeling that was confirmed when I first meet him. 

That weekend was a very full weekend for me and my family.  Remember I said my symptoms started November 10?  Well, I can’t ever forget that date.  Why?  Because my MS symptoms started the day before my birthday.  And that Sunday, November 12th, was the day the Minnesota Vikings hosted the Green Bay Packers and my parents held their annual Border Battle party.   By the time of the Border Battle the only part of me that had normal feeling was my mid-chest and up, including my upper arms.  I had no sense of feeling anywhere else, except tingling.  I learned really quickly how to read those tingles too and to know how much pressure I was applying to things like my gas peddle. 

My first appointment with my Neurologist was very interesting.  One of the first questions he asked me (and he hadn’t looked at the questionnaire I had filled out) was if anyone in my family had MS.  And the way he asked the question it almost seemed like he didn’t expect an affirmative answer.  He seemed a little surprised when I told him that yes, my dad has MS and has had it for over 20 years.  My doctor also commented that it seemed like my right eye was a little lazy.  I can remember sitting there and thinking “what the hell are you talking about?  I just had an eye exam in July, they didn’t say anything then about this.”  So my doctor ordered blood tests, an MRI and a VER.  I don’t remember ever having to have an MRI, so I was little scared / nervous about that test.  I knew what it involved, but that somehow didn’t make it any easier.  

The MRI clinic couldn’t fit me in on that Wednesday so I had my test the next day.  Mom took the day off and came with me.  It was a relief to know that Mom was sitting in the waiting area while I went into the tube.  I didn’t really have a problem being in the MRI tube, but I did have a big problem getting the needle for the contrasting dye.  My appointment for the MRI was at 1, but because it took so long and so many images had to be taken I didn’t get a chance to go back to the doctor that day with my films.  So Friday morning Mom again took time off work, we picked up my MRI films and then headed over to the doctor’s office.  My MRI films showed lesions in the left hemisphere of my brain and also a lesion directly on my spinal cord at my C2 level.  I didn’t find out about that lesion until later after I’d had a second set of MRI’s done since the first set wasn’t low enough on my spinal cord.  Of all of this, learning about that lesion is what scared me the most.  The location of that lesion means if it gets any bigger there is the chance it can cause total paralysis.  I could live without my legs, but dangit, I want to keep the ability to use my hands.  Otherwise, I can’t do for myself and I’d have to depend on others to do everything for me.

I digress though.  After the doc looked at my films he told me I had to go have a lumbar puncture done.  Folks if you ever have to have one done, make sure your Neurologist can do it and I also highly recommend being put to sleep for it.  That was the worst experience I have ever gone through.  If you don’t want to read the gory details, skip the rest of this paragraph.  You still here?  Ok.  Mom was still there with me and we headed to the hospital.  At the hospital I was given a local in my lower back.  And yeah, that numbed the surface and first few layers.  But once that needle was put into my back I felt ALL of it.  Not only did I feel it, but at one point when the needle was moved it hit a nerve and I felt it down through my hip and into my leg.  While the needle was in my back the Radiologist made me roll over onto my left side and curl my legs up.  He made me roll back onto my stomach and they tried to get me onto my side again.  I wasn’t doing it.  It hurt way too much.  Mom was in the hallway just outside the door alternately talking to J and Dad.  Both of them could hear me through the closed door and over the phone.  It was that bad and I will never again do a lumbar puncture without being put out for it.  I thankfully didn’t suffer any side effects, some patients have been known to get a spinal migraine and I’ve heard that those are 10 times worse than a regular migraine. 

While driving home from having the VER the week of Thanksgiving I stopped at the animal shelter.  I had wanted a cat and was planning on waiting until after Christmas since I would have to get all the stuff for a cat.  I had looked at the adoption events at the local pet stores and while they were cute, none gave me the “this one, this cat comes home with me” feeling.  I expected the same thing to happen when I went to the shelter.  Yeah, that didn’t work so well.  I saw Tasha and knew I wanted her.  That weekend J and I went back so I could fill out the paperwork and they let me hold her.  I still had no sense of textures so I couldn’t feel how soft she was until I rubbed my cheek over her.  It took three days worth of IV steroids to bring the feeling back into my body.

Because of the lesion located directly on my spinal cord my Neurologist made the decision to put me onto a disease modifying medication right away.  I really had to get over my apprehension of needles and while I can give myself shots now, I really don’t like it.  J will laugh at me because I clean off a very wide area and often poke around trying to find the one spot that’s going to hurt the least.  I can’t wait until the oral medications finish testing and receive FDA approval.  I’m so over having to give myself shots.  Other than that, these days I’m doing pretty dang good.  I occasionally have an aching pain in my hands.  And the muscles in my legs get tired, especially when it’s cold out.  I constantly fight fatigue but I’m moving.  And I’m not going to let MS stop me.  Sometimes it slows me down, and sometimes it forces me to take a detour, or in the case of bike MS, accept a ride when I can no longer ride the hills.  But I’m not letting it stop me from moving.


3 Responses to My story…or, why MS sucks

  1. Dad says:

    Valie is so right about the pain from the spinal test. As I read her feelings about the pain I still remember the pain even after 30 years.
    Thank you Valie for sharing yours and part of my stories.
    Love Dad


  2. Bridgette says:

    I wanted to say hi and let you know that I saw you on the Weight Wstchers sight that i just joined. I was looking for MS related posts and found one (so far) and then linked over to your blog. I was pre-diagnosed/diagnosed in December of 2008 – I state at that way because one set of docs says it’s MS and the other says pernicious anemia and I have to wait a year before I find anything more out. I also, am quite open about my MS. I figure my friends and people knowing is just educating them on it. And, I’ve been blessed with an amazing support system. I’m glad to find more people on different sights in very similar situations to myself. And, basically, I just wanted to say hi! Bridgette


    • craftycritter says:

      Hi Bridgette! We usually do a Living with MS thread on the Women’s Health board usually M-F during the day. Anyone is welcome to start it. It seems most of us are just here and there on weekends so we don’t usually do a thread then, although you’re always welcome to.


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