Last reply 10 months ago
My MS Story…It's long!

Hello all! My name is Acacia. I am very new here and wanted to start off with my MS story.

When I was 24 (in 2014) my left eye started to hurt, especially if I strained too hard to look in any direction. I chalked it up to allergies or something that would go away. I mentioned it to my mom and she was immediately on high alert (my Mom and I are super close, I’m very very thankful for her) and told me I should make an eye appointment. I did, but there were a few days before I would be seen. Over the next couple of days my vision in that eye started to get…fuzzy. It was so strange. Like my eye was filling with water, but looking through the water made things fuzzy. I kept my mom updated about the fuzzy vision and during work she called me and said “honey, I made you an emergency eye appointment. You need to be there in half an hour.” Thankfully I worked with amazing people so they shooed me out the door to make sure I made it on time. A few tests later at the eye doctor and they thought that I had optic neuritis but also thought that I needed a second opinion. They informed me that I had an appointment with an eye specialist at OHSU (I lived in Corvallis and OHSU is in Portland, about an hour and a half drive away) in an hour and 45 minutes. So I called my coworkers (I was currently on my lunch break do do this first eye appointment) and said that I wasn’t going to be able to come back since I had to go to Portland. Again, they were nothing but supportive and told me to keep them posted. At OHSU (we made it on time!) a few more tests later and the specialist was sure I had optic neuritis, but couldn’t do the “for sure” test since my eyes had been dilated back at Corvallis. I was scheduled for an MRI literally the day after next. The specialist had mentioned that optic neuritis is a pre-cursor for MS. It didn’t hit me until my mom and I were walking out of the building. I remember looking at her and saying, ” I really don’t want to have MS.” and my mom looked at me with eyes that were full of worry. It had hit her much before it had me. I had my MRI and the next day they had my results. I went to my primary care Dr (who is also a family friend) and I will never in my entire life forget what she said: “It looks like typical MS.” I felt like my heart stopped. I had literally started the week thinking that I was going to get eye drops at the optometrist to fix my wonky eye and ended the week being diagnosed with MS. I sobbed in that waiting room, not knowing what life would hold for me. I immediately imagined a wheel chair. I imagined the very worst. That’s when I met my boyfriend of a year and a half at our apartment and told him. Since this began he had been researching. He had been researching about MS, about the symptoms, the age group most affected. He held me as a sobbed and through tears told him that I didn’t blame him if he left. He held me and assured me that the thought never crossed his mind. Later I would make him promise that if he found himself unhappy in our relationship that he wouldn’t stay because of my MS, that if he wasn’t happy he needed to move on. 2 years later in 2016 I proposed to him overlooking Yosemite National Park at sunrise, we’re getting married in May. We own a home together and have two wonderful fur babies. I love him more than words can express. MS has made me extremely thankful for what I have. I have people in my life that have approached me, letting me know that they too have MS (I would have never known!) Also letting me know that they were there for me. I started Copaxone (now the generic) and it’s been working very well (knock on wood). I’ve had a second MRI and the few lesions that I had seem to be “quiet”. My spine is also clear of lesions. I’m getting ready to schedule another MRI for another basepoint for my neurologist, who I love. No relapse (knock on wood again) but they have this new high tech MRI machine that takes superior images. Waiting to get money back from taxes since even the co payment for an MRI is astoundingly expensive. Though I’m sure most or all of you know this! To be honest though, my MS does make me feel a bit like an imposter. A bit later I was diagnosed with optic neuritis in my other eye, but besides that I’ve had no other relapse. I see people struggling, and trying to cope with their MS and I look as though I’m unaffected. I have fatigue and cognitive fog but I always question whether that is MS or just a part of me! One of my friends who also has MS says, “When you hear hoof bets think horses first, not zebras.” So I always try to not jump to conclusions. People also don’t take me very seriously when I say that I have a chronic illness. It’s frustrating when I tell people that I have MS and they look at me glass eyed, not sure what that even is. Then when I explain they just say “Oh.” Like it’s not a big deal, when in reality it is a very big deal. AND it’s frustrating because I want to know the course of this disease, which is impossible really since it’s different for everybody. I might have “quiet” MS now but what does that mean in 10, 15, 20 years!? I’m very thankful to be a part of a group who understands. Thank you all for being here and I apologize for such a long post.

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1 year ago

Hi @adbdarly
It was long but not that long. I just wanted to let you know I read your story. We all have a story and it takes some courage to put it out there.
The people around us on a daily basis don’t know what we are going through. At least the people on here can relate on some level. I get some solace from that. Knowing I’m not alone.
What kills me about this condition is the unknown. The loss of control. How to not let this thing be the center of our lives. I have had this problem for over a year now and am nowhere near knowing how to cope with this thing. I’m so done. Anyway, welcome to the group. Hope some other people chime in.

1 year ago

First of all congratulations on how far you’ve come since your diagnosis. It musn’t of been easy to have all that done in such a short amount of time but you seem to have managed to carry on living a normal life. Also I agree about when people say things like “It’s no big deal”, that tells me that the people I’m looking too for support aren’t taking this seriously and I was pertified about what the future might hold for me. What I love about this site is that it has allowed me to express all my concerns and angers about MS rather than keeping it bottled up and everyone has been very supportive and gave me very good advice.
Right now I seem to be at peace with my condition. Yes I have bad days (who doesn’t) but I just take it day by day and just hope for the best.
Best of luck with the wedding and welcome to the site :).

1 year ago

Hi @adbdarly and welcome.

Your story will resonate with a fair few of us. We’ve all been there and had similar realisations about “friends”, values and relationships.

MS used to be synonymous with wheelchair, but no more. Medical science has now provided us with a range of drugs and treatments to slowdown, and even halt the progression of this condition. There, reasons to be cheerful! 😉

1 year ago

[email protected], wow, that was the mother of all long posts! Sounds like you are pretty on top of things. Going through all the asssociated processes, it is special when you can emerge and still be thankful about aspects of life. For sure, havin MS has enabled me to view things differently, perhaps in a way I could never have done before being diagnosed. And cheers to having a wonderful partner, it most certainly helps! This site has been an amazing friend to me, I’m glad you’ve found it too x

1 year ago

Hey quite the diagnosis story. It’s always the thought about the wheelchair that’s the worst. I’m glad that you really focused on what’s important with your husband and show your strength to this day. I’m sure the positive forces in your life must’ve helped you in remaining almost symptom free. Congratulations!

10 months ago

Your story sounds so similar to mine. I was diagnosed earlier this year after two separate cases of optic neuritis (although I also had two MRI’s and a spinal tap during a week long hospital stay to confirm) but I have also only experienced fatigue and occasional weakness in my legs but it always goes away overnight. I often struggle with feeling like “an imposter” as well. I look at it like it was caught very early so I shouldn’t feel guilty for not having to use assistance walking or having horrible symptoms like most have. I know things will look a lot different 20 years from now but the best thing I can do for myself is not focus on what could be and be thankful that I still feel mostly normal. I say often, “it could always be worse” and I hope you find peace knowing you aren’t alone! Being from a very small town, having a platform like this to communicate with others like me has been the biggest blessing coping with my illness. Anyways, it sounds like you have a beautiful life and are very blessed with support at home. Congratulations on the wedding! Best of luck 🙂

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