lissaxox 15/01/18
Last reply 5 months ago
My Story

Hello!

This is the very first online community I’ve join since my diagnosis and I figured a good place to start was with an introduction and my own story. So hello everyone (or anyone who may stumble upon this!) (: !

My name is Melissa, I am 28 years old, and I was officially diagnosed with Relapsing-Remitting MS on November 21, 2017 though that’s not really where my story starts.

I first experienced symptoms on April 22, 2016 and I’ll never forget that day – I had just started a brand new job and I was only two weeks into it. I had started telling people at work that something was off that day, some would even pull me aside and inquire what was wrong. I couldn’t put my finger on it, I just knew something was wrong. Most of them shrugged it off saying things like, “You’re just stressed.” or “It’s your first two weeks, learning all this information is overwhelming.” I tried to convince myself they were right but I knew that deep down it was something more than that.

When I woke up that morning, I felt incredibly tired. But not the type of tired where you go out all night, come home and get two hours of sleep, then go to work tired. It was the kind of tired where I had attempted to put mascara on but even holding the brush up to my eye was extremely exhausting – nearly impossible. BUT it didn’t really raise any alarms to me, just seemed odd, so I carried on and went to work.

It was only after getting to work that I realized I couldn’t talk properly. The words and sentences would formulate in my mind but I couldn’t bring them forward and out the same way. My coworkers described it to me as if I was someone who was either incredibly intoxicated or what they imagined someone who had suffered a stroke sounded like – my speech was slurred, broken, almost nonsensical. I had tried to rationalize what was happening as nothing to worry about but I think I already knew at that point it was more than that.

Nevertheless, I didn’t actually go to the hospital until late afternoon that Sunday (this is particularly odd for me as it should be noted I am very much a hypochondriac when it comes to my health but again, I think I knew this wasn’t nothing but was hoping it would just “resolve itself” so I could avoid it). At the hospital all my blood work was normal and so I went in for a CT scan. After the scan, the doctor comes into the room and says to me (verbatim). “I wish I had better new for you but you have what appears to be a mass on your brain and we need to send you to ________ for an MRI.” (*I will avoid describing the shock, tears and heartbreak from my loved ones and that moment you realize that your world is about to change and in my mind for the absolute worst — because I’m sure reading this you can kind of imagine without me describing it in detail).

After my MRI, the neurologist comes in and explains that I didn’t have a mass on my brain but in fact a number of lesions. I went in the next day for a lumbar puncture, a chest x-ray and a series of blood tests. Everything came back clear. Since my speech was so severally affected, I went into hospital for the next 3 days for steroid therapy. (My speech returned to normal within a week of that therapy).

I was referred to my local MS Clinic and from there I was going for MRI scans and appointments every couple months to monitor. I was advised that I was considered CIS until any changes occurred. My scans remained unchanged until November 20, 2017 and it was then I was diagnosed with RRMS. On my 28th birthday, I met with an MS Nurse to discuss my diagnosis and the DMT options available to me. I decided right away that I would be going on a DMT and started Avonex a week later.

And that’s it, a brief overview of my journey so far. I knew right away I wanted to get more involved in the community – to share my story and to read/hear stories from those willing to share theirs. It’s only now, that the “dust has settled” a little (so to speak), that I’ve decided to share my story and start this journey. I look forward to continuing to get more involved in the community and continue to learn as I go along.

Thanks for taking the time to give this a read (:

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edmontonalberta
6 months ago

@lissaxox

Melissa – one of the MS challenges is finding someone nearby us we can meet in person. To talk about how we deal with this stupid disease & other relevant topics. My wife & I will be in Winnipeg this September; our bi-annual vacation.

Interested in getting together for dinner?


stumbler
6 months ago

Hi @lissaxox and welcome. I did “stumble” upon this, but with my username, I do this all the time! 😉

Yours is a story that we can all relate to. It does take some time to get through all of the post-diagnosis emotions and that is where you are now.

We’re a multi-national community, with members on all continents. So a range of views and experience.

Feel free to pose questions, join in ongoing conversations or just have a rant. We will understand.


miapi
5 months ago

Hi @lissaxox, and welcome.

I can so much relate to your story. My diagnosis happened last June.

I can relate so much to the gut feeling of ‘smth is very wrong’. I had this right before my symptoms started. I just knew something was very different than any other time I ve hadn’t felt well.

I also heard things such as ‘there is something wrong with your brain’, and ‘there is a chance you have a t.’, before I had an MRI.

I really can understand what you went through.

Even though diagnosed a bit earlier than you, I still struggle a bit with fully accepting the diagnosis, so if you ever want to talk or exchange any thoughts let me know.

PS: I am 28 too

x MiaPi


swtrixie
5 months ago

Welcome 🙂 One of my clearest memories of when I was diagnosed was the phrase “everybody’s MS is different”, and that was the most terrifying thing to me because I had no clue what to expect and if/how much my life plans had changed in an instant. I’m slow, so it took 2 or 3 years to adjust to a different way of thinking and approaching my life. The most valuable tool you can have is a strong support system – family, friends, medical professionals, and of course fellow MSers. It sounds like you have a good neuro, and have started Avonex which are both extremely important (which tells me you’re a fighter 💪). Just remember to listen to your body, and advocate for it. Everybody’s MS is different, so ask a question here and you’ll have plenty of possible solutions!


hmcampos
5 months ago

@lissaxox your story began like so many of our stories around here and I am sure that, like me, so many can also relate.

Be strong and remember that you have MS but MS does not have to have you.
Cheers.
H


jonesy4
5 months ago

Hi Lisa,
I cannot imagine how devastating it must be at your age, there are so many things I wish I had done when I was younger so my message to you is to try not to let ms define who you are although that may seem hard at the moment. The best thing I did was join the local MS Centre where I go for oxygen therapy and shiatsu massage. Not only do both help but I have met many people who have had MS for over 20 years and not all of them are in wheelchairs, those that are have helped me to understand that life can still be good and they haven’t lost their sense of humour.
Use this site as you will usually find the information you need. Take care and be gentle on yourself.


lissaxox
5 months ago

Thank you all so much! All the your kind words and messages of welcome, hope and understanding have made me feel really happy about taking this step and sharing a snippet of my journey knowing that you all can relate to it in some way and it makes me feel really comfortable about continuing to share more and reaching out.

Thanks for the welcome! (:


nutshell88
5 months ago

Hi Lissa,

I hope you’re having a good day.
And I hope MS is treating you well.

To be honest your story brought tears to my eyes. Reminded me of time where my speech changed some students were making fun of me. Reminded me of how fluent I was when I was 4 years old even better than now. Reminded me of being unable to go on stairs in high school suddenly * till now *
And not knowing why.
And most importantly remember my father was hiding his tears in the hospital after mri scan when i was 17.
But i didnt know then. Till after 5 years i love my parents for not telling me. I enjoyed my youth off worries and off relapses.

But dont worry lissa im not disabled yet after 13 years and i hope it never cause any perminant disability for you and me all our lives.
I believe nothing is impossible.

Thanks for sharing your story snd sorry you had shocking time.

Be safe
R

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