Nov 212010

i’ve been asked to tell my MS story… and i’ve been putting it off…. i said i would do it… and it’s just overwhelming to sit down and try to write it out in chronological order. but here, now, i’m going to give it my best shot. i’m sure the new MS page will get edited… in fact, i know it will. my plan is to keep it as current as possible. i wish that with the blogger platform i could do post entries on that page the same way it is done on my main page…but alas, nope…. so i will start this off by telling my story up to this point. then for updates, i will simply treat my MS page as a journal in which i write dated entries…. much of this will be redundant information because i will continue to write about my MS on my main page surely. it is now a part of who i am. it does not necessarily define me, but it has altered my existence. everything i do is done with a heavy consideration to MS… you see, i have to plan… i have to decide what is a priority, what it is i really want to accomplish on any particular day. i can’t do everything in a day like i used to. i have to pick and choose. and that is fine… it has forced me to slow down… i guess that is fine too.

i self-diagnosed on September 18, 2010. jokingly, i told coach and my daughter that i think i have MS…. it was the best case scenario i could come up with for what was happening to me on that day… that is the day i couldn’t make my feet go forward…. scary shit.

i was given my “official” diagnosis on October 26, 2010. however… after learning about MS and talking with my neurologist i have discovered that i have been having symptoms for a VERY long time… i can go back to 18 years old! yes…really.  i haven’t figured out how to include all those years in my story without getting so wordy that you freakin  fall asleep on me ha! 

one of the first questions my neuro asked me was if i had ever had mono… yes  i did… i think i was 16. i remember having it quite clearly… i was soooo sick. i laid on the couch for at least a week. and i also remember my mother asking me “don’t you think this would be a good time for you to quit smoking?” what?! i didn’t know that she knew… holy hell! how do our parents know that kind of stuff about us? go figure…

when i was in my late teens, i was very clumsy. i could fall over absolutely nothing. put me on a flat dry, smooth surface and i would fall. all the time. i walked into walls. i stumbled. i lost my balance. i dropped stuff…. all the time. someone in my family lovingly gave me a t-shirt labeling me as “Super Klutz” ha! i took it in stride…it was a cute shirt.

when i was 19 i started having pain, tingling, and numbness in my right elbow. i went to the doctor and was told i had tendonitis… no meds, no x-rays, no nothing… he put my arm in a sling and said “let’s just keep an eye on it and see what happens”… after a bit of time, it went away.

sometime in my very early 20’s my wrists hurt and my hands were tingly & numb… i was working at a medical clinic at the time, getting ready to start nursing school. i went back to one of our docs and told him about my hands. no  x-rays, no tests, no meds… he said i could sleep with braces on my wrists if i wanted to… and he said “let’s just keep an eye on it and see what happens”. …. after a bit of time, it went away.

my hands and feet have been tingling and turning a pretty shade of grey/blue for as long as i can remember… i don’t know when it started… the many times i’ve gone to various docs about it, i always go the same answer “let’s just keep an eye on it and see what happens”…. one doc told me i had Raynaud’s Syndrome… oh great. this symptom has never gone away, but it doesn’t last for more than a few hours at a time. it doesn’t happen daily, just a few times a week. no treatments, no meds, no tests…..

heat… oh man, don’t get me started on the heat. i have long professed that i HATE to sweat… i HATE summer… i HATE getting hot… i get sick to my stomach, weak, dizzy…. i feel like someone is poking me with hot skewers all over my body…. it’s funny – now i know why. i always just thought i was a woos. guess not…. i never really mentioned it much to other people… i just dealt with it and stayed out of the heat as much as possible. i have been taking cool showers for most of my adult life. no hot baths either… no hot tub partys….nothing…. then the summer of 2009 coach was working some football clinics and i tagged along for the trip. we were at TCU and Baylor… it was wicked hot outside… i was very good about staying hydrated… i drank more water and gatorade than i care to think about… but i got sick…. they all thought (and so did i) that it was heat exhaustion… near the end of the trip, i was confined to my dorm room because i just had no gumption… no energy whatsoever… i was miserable…. it took me about 8  months to fully recover from that.

as for the hot poking skewers… i have had that sensation since i can’t remember when… i thought everyone felt that sensation… i thought it was normal…. silly me! for many years i felt that sensation only on my legs… these days when i get hot, i feel it all over my body… mostly my arms and legs, but also on my face and upper torso now…. and nothing makes it go away except to wait until my body cools down…

so there’s the preface, the background….  my neuro thinks my MS was triggered  by the mononucleosis, which is caused by the Epstein Barr Virus… and EBV is though to be a cause of multiple sclerosis…. there are many sources out there about this theory… go figure… the ol kissing disease that we all passed around in the 70’s comes back to haunt us…. great… freakin great….
Being an adult is like looking both ways before you cross the street and then getting hit by an airplane.

  11 Responses to “Gonna Start on My MS Story”

  1. Sherri your story is very simular to mine in some ways. I don’t remember ever being diagnoised with mono but I do remember it going around. I can remember wondering why I was always so tired all the time even as a freshman in High School. Releived to find out I wasn’t just lazy all those years. Oh and heat no forget it. When all my friends were laying out in the sun I was heading for a shade tree.

    • it’s funny how many of us have such similar stories… i’m learning that there are so many things that we have all experienced with no explanation, or the wrong explanation…. I was rather tired my junior and senior years. it was almost an apathy. so many things happened to me those two years and i just figured i was just tired from all the drama and grief… now i see that this may not have been the case at all… who knows. at any rate, i’m glad to know that this hasn’t all been me crying wolf or being a drama queen… although i think if i had a choice i would go for the drama queen label than the MS label ha

  2. Thank you for sharing your story and having the courage to share your fight with our disease. I am enjoying your blog very much and have tried to send a response a few times but have managed to delete them before they were posted. If this is a duplicate message—-sorry.

    I look forward to reading more! Lois

    • i’m so glad you are enjoying my stuff here…. my blog has proven to be my sanity… funny how it started on a whim a while back and now it’s in place and ready for me when i need it most…

  3. Amazing how many of us with MS have similar stories. I had mono as a teen, weird symptoms as a young adult (in the 70’s) that were either diagnosed as something else, or blown off. The heat has always made me extremely ill all my life. Incidents of bewildering symptoms that would come and go throughout my adult life. I suspected MS back in the early 80’s, but the docs just thought I was crazy.

    In my middle years I chalked all the symptoms up to menopause, but when I couldn’t walk well, and lost the sight in one eye, I decided it was time to get some real answers. I was diagnosed in November 2009. Getting the diagnosis was a somewhat of a relief, I have not been crazy or a hypochondriac all these years. Well…okay, maybe a little bit crazy, but that has nothing to do with the MS 😉


    • it is amazing… you are right! the more i’ve been reading stories and blogs the more “aha” moments i’ve been having. much like you, as i got into my mid 40’s i attributed much of what was happening to menopause as well…. turns out that’s not the case… which only means i still have menopause to look forward to… ugh! i can only imagine what hot flashes with MS are going to be like… sheer torture i’m sure!

  4. >oh wow…that's MS for u though…it's good that at least u have a diagnosis now

  5. WOW, now that they know that’s what you have and everything is official, and hindsight really is 20/20…. is there anything they could’ve done to prevent it? I don’t think there is anything we can take to prevent mono, is there? Once again I admire and rejoice in your courage and optimism 🙂

    • i don’t know of anyway to prevent mono… at least i’ve never heard of anything…. and i don’t know if they would’ve been able to do anything about the MS back then…. that was in the late 70’s and there was no real treatment for MS yet… it wasn’t until the 90’s or so that they came up with treatments… i only hope that now when people start having these types of symptoms that it doesn’t get blown off… i think back and wonder how many times i was blown off that i don’t recall….

  6. oh wow…that’s MS for u though…it’s good that at least u have a diagnosis now

    • i must admit that getting an official diagnosis was both a relief and a horrible thing. the most positive aspect is that now i know what i’m working with and what i can do to try and help myself. it’s a journey into the unknown… that is the worst part… not knowing from day to day what to expect… i can be fine one moment and not so fine the next…. but i guess it’s that way with all of life….

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