Friday, December 13, 2019
Home / Power Stories / Jamie’s Story (Multiple Sclerosis)

Jamie’s Story (Multiple Sclerosis)

I am honored to be the new Multiple Sclerosis Power Writer here on Fight Like A Girl Club. I have a passion for raising MS Awareness and for being a face of MS with a positive outlook on this disease.

I grew up familiar with the disease but never imagined that I would be living it one day. My dad was diagnosed with MS about 18 years ago.  In November, 2008, my personal MS journey began. I started having what I called “dizzy spells” but I wasn’t really dizzy. It’s just the best word to describe what I was feeling. The best way to explain it is the feeling you get when you’re crossing your eyes and how it feels in your brain. I don’t know if that feeling is the same for everybody but that’s what it felt like to me. At first, it was happening 2-3 times an hour and then became more frequent. Eventually, it was happening every 7-8 minutes, all day. I could time it like clockwork. If I was writing or talking when one happened, I would slur my speech or not be able to write properly. I finally realized that something was happening in my brain that felt like it could be something serious and that scared me enough to go to the doctor. I went to my family physician on December 5, 2008 and he immediately got me in to see a local neurologist the same day. They thought I was having seizures or mini-strokes.

Thus began the series of tests, doctor appointments, hospital stays and MRI’s.  Once the doctor realized my dad has MS, he started testing for MS. I told him I wanted the fastest way to a diagnosis and to find out what was wrong with me. So many people go years without a diagnosis and my heart goes out to them because the unknown is sometimes scarier than the diagnosis. I had numerous MRI’s of my brain and spine and then had a spinal tap that confirmed the diagnosis.

Diagnosis of MS can be a very tricky thing. MS is so unpredictable and it is one of those diseases that is very different in each and every person with so many different symptoms. I was “lucky” in a way that I had a diagnosis very quickly and was immediately started on MS injections.

The first year was pretty hard as I was finding this “new normal” to my life. Having young children, lots of pain and no energy left me feeling pretty lost most of the time. It was a struggle to get up and go to work every day and to try and “be ok” in front of my kids. My brain felt like it was turning to mush and my legs felt like jell-o. I slept during my lunch hours and came home only to crash on the couch. I had lots of problems finding the correct word to use when talking or writing. I saw lots of specialists and was really sick of doctors within a few months.

Currently, I am doing well. I’ve had two relapses since my diagnosis but currently am just loving life and making the most of each day. I’ve learned a lot on this journey. I’ve now been living with MS for 2 years and 1 month (as I write this). I don’t know what the future may hold or that I’ll even be able to walk one month from now. I do know that I have MS but it doesn’t have control over me. We can’t choose what happens to us but we certainly can choose how we choose to react to it and how we use it to help others and make a difference.  I plan on making the most of every single day and showing this disease who’s boss!

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

Check Also

Hannahs-story-multiple-sclerosis

Hannah’s Story (Multiple Sclerosis)

Hi there! My name is Hannah. I am 16, and I was diagnosed with Multiple …

14 comments

  1. What a cool idea… to mate up people with new diagnosis!!! Smart and powerful girl.

    • Your pic of llamas made my day. I have been chronically ill all my life. My mom is my best friend. She would take me to see the llama {roody} who lived by the rootbeer stand after picking up my meds. It helped me realize my illness is only one part not the whole of me. Thank god for my mom she is my rock

  2. Hi. Sorry for your diagnosis… completely different then mine but a lot of the same feelings about finding answers and of course being sick of doctors and all the poking and prodding… but the waiting, it is the worst!
    Hugs and prayers coming your way!
    Ricki (liver disease)

  3. Good for you, Jamie, in proactively requesting that you be diagnosed as soon as possible! I hope that over time, you’ll reap a lot of benefit from your injectable med. It’s a disease that introduces so much uncertainty into our lives, isn’t it? My MS hasn’t progressed since 1996, when I began my first med, Avonex. There have been no further exacerbations, fortunately. According to the neuro, only 5% of people with MS on these drugs will progress to the point where they need a cane or other mobility aid. I’m glad you and I live at this time – good luck to you!

  4. Hmm, interesting. Just curious, do you think trouble finding that elusive right word is caused with MS? Well, I’m happy that Avonex is working for you because it didn’t for me. I tried it for three years and then it made my symptoms of MS so much worse. If I’d continued, I would have definitely been wheelchair-bound. That was my third attempt and second med in the 8 years I’ve had MS. At first I was in denial about the drugs, so I went on the recommended MS diet. I bore with it but my fear of losing my beloved mobility pushed me to try Copaxone, which I did for three years. When my subcutaneous fat shrank, I moved to Avonex. I’m a single 22 yr-old and now am happily on Tysabri, which gave my mobility back and really strengthened my body. I’m in the first year of this treatment so I hope that it suits me for another year and a half, well, half in October.

  5. Jamie
    I was diagnosed in 2001. I took Copaxone up until May of this year when I started on the new oral medication Gilenya. Unfortunately for some it is for relapsing-remitting only, but I’ve been very fortunate that it’s working for me so far (by the grace of God of course). Although every MS fighter (seasoned or newly Dx we’re all oni the same fight and could use every bit of support out there. Thanks for sharing your story. Live well, fight strong.

  6. I was diagnosed with MS in March 2007, and breast cancer in July 2007–talk about a double whammy. Forturnately, the breast cancer was caught very early, I had a lumpectomy, followed by radiation therapy and Tamoxifen, and have been cancer-free since. The MS has been much harder to cope with. I have alternated between using a cane and a walker since the first year. I started off on Rebif, but I have been on Tysabri for 2 1/2 years. I switched because I was having relapses every 3 months on Rebif; now it’s been just over a year since my last relapse. The pain and fatigue are so hard to describe to someone who doesn’t have the disease. My first neurologist even told me MS doesn’t cause pain–I fired him! My life has changed so much; I’m still getting used to this new “normal” and the uncertainty that goes along with this disease. The love and support of dear friends give me the will to keep fighting. I have learned to focus on the things I CAN do today, instead of worrying about what I won’t be able to do tomorrow.

  7. It is so interesting to hear other people’s stories!. I have been living with MS for 7 months now and already on my second medicine. I was first on Copaxone but after first 3 months of extreme pain they told me I was allergic to that. Great. Then I had to wait for insurance and all that to start on Rebif. In the downtime of being off a medicine I had a relapse, which consisted of extreme fatigue and lost more vision out of my eye. (That is how i realized I had MS in the first place, One morning I woke up and couldn’t see out of one eye.) Now I have been on Rebif for last 4 months. Seems like it’s working well. The only down fall of it is I have bruises all over my body!. Rather have bruises and walk then have bruises and be paralyzed!

  8. Hi Girls, Thanks for the info. I have not been diagnosed but I am a nurse and suspicious of tongue and lip tingling, starting in my feet now sometimes and I seem to be off balance quite a bit. I’ll come back and visit.
    ~~Lisa

  9. this week has been hard but just knowing that there are other girls out there helps so very much . I know that we all have diff. things going on in our bodies but just to talk about it with someone who knows helps so much more than you will ever know . thank you for sharing your story , Shannon

  10. It’s so encouraging to hear stories of other women dealing with this disease. I was diagnosed in 2009 at age 19. I felt like my life was over at first, it was a very lonely feeling. It is a great feeling to see that other women out there are fighting this and living their life despite their symptoms. People don’t understand how hard it is considering most of our symptoms are inward. Stay strong ladies!!

    • I just found this site today…I was diagnosed with MS in 2006. Started on Avonex then to Rebif…two years ago i decided to stop medication as it was making me feel worse….had 2 hand surgeries and felt better off the shots….not sure it was the right thing to do but I did it…..
      Lately though I’m having more issues with my legs and hands and a tightness in my chest….but I continue to go to work every day and raise a 16 year old daughter on my own….
      It is a scary disease when you don’t know what it is….and frustrating when you can’t get the body and mind to work together to say the right thing, write the correct thing, or walk like you ‘should’…and Darcie you are so right about the symptoms being inside and no one can see them so they don’t understand. I have gone from feeling very intelligent (editor of a small newspaper) to feeling dumb when I can’t explain something simple to my teenager or I say the wrong thing, or can’t think of the words I want to say….I’m glad that there are sites like this for us to share…..thanks

  11. Hi, Jamie Sorry about your DX but I know how you feel I was DX in Jan 2012 and had a second attack just a last week and its hard but keep your head up and lean on the people that care and want to help you! I was on Avonex but ended up having to change to Copaxone because Avonex was not working and may end up having to find another one shortly. Most of Thank You for Sharing your Story!

  12. Jamie,
    Is this forum still active looks like it’s been a while adn I would love to share stories with you and learn about others. I’m 43yo and have had MS for 10 years and was just diagnosed with Leukemia last year. I get to fight like two girls!!! Please let me know.

    Kelly from CT

Leave a Reply

Your email address will not be published. Required fields are marked *