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New and Confused

I have just recently been diagnosed with MS. It hit hard at first and i can’t stop thinking, why me? I lost my mom in a accident almost 3 years ago and just recently turned 21. Mid-march, I started to go blurry in my right eye and two days later I was completely blind in that same eye. After waiting for my sight to return, and being disappointed, I saw more doctors than I can count and have been poked with needles more than ever before. I had Optic Neuritis. My eye hurt which felt like headaches and here I am 1 month later with no full sight yet. When my Neurologist did MRI’s, they located a small lesion on my T2 spine. They told me I have early RRMS. They’ve told me I can go years without an attack and yet, every time i stutter when talking or run into an object out of clumsiness, I cant help but ask if its the MS. I’m a VERY positive person and I never stop smiling so I refuse to let this take control of the life I’m just starting to live. It just takes some reminding sometimes.

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  • tshann1701
    1 year ago

    Hi Coles! This is a great website for info and encouragement. It has really helped me to hear other people’s stories. Here is mine. I am a 58 year old woman living in Las Vegas. I had been working as a letter carrier for the USPS for 13 years. Last July I was delivering the mail and I passed out. Vegas heat about 120°. I woke up in an ambulance. I spent a few days in the hospital with heat stroke. Then I went on vacation for two weeks. I went back work and passed out again INSIDE the post office! Another trip to the hospital. Tests and more tests. In OCTOBER I got my final diagnosis as MS. Now here is the really weird part- they figure I had actually been misdiagnosed for 20 years! MS is misdiagnosed a lot as other things. (Yes, my neurologist said letter carrier is probably The WORST job on earth for someone with MS!) My condition got worse rapidly. I went from fainting and shaking and migraines to horrible fatigue to needing a cane and walker in just 5 months. The walker is because of my lack of balance and fatigue. I can only walk maybe 20 steps without stopping. I started the MS drug Copaxone in January so know we wait and see. I am now officially on Social Security Disability Retirement which is strange – my whole world has changed. But I have a great support system around me – family, friends, doctors. I also have two nieces who were diagnosed with MS 20 years ago. My advice to you is get support, read everything you can and try out different drug therapy now while you are young. There WILL be a cure in your lifetime! Hang in there!

  • Erin Rush moderator
    1 year ago

    Hi coles! While I am sorry for your diagnosis, I am glad you found this community and have taken the time to share a bit of your story with us. I think our members have shared some great insight on life with MS and there’s really not much I can add.

    I will say that anytime you need to vent, share, or just get some extra support, please don’t hesitate to come here and post!

    I do hope you are able to stay symptom free for many, many years to come and that you are able to not stress about every stutter or stumble.

    Best, Erin, Team Member.

  • Nancy W
    1 year ago

    It helps me to notice if a new symptom lasts more than a day, so if I notice clumsiness or stuttering once, I try to let it go. I wasn’t diagnosed as young as you, but I can understand. Try not to worry about it. MS will let you know if you need to pay attention.

  • awallic
    1 year ago

    Hi Coles.
    Im 23 and was diagnosed in 2015. I went through literally the same exact thing as you (except losing a parent), and it was my left eye. I had had one incident a year before but I had thought nothing of it. Then I woke up one morning with crazy blurry vision in my left eye and just thought i had slept on it wrong or got something in it to irritate and it would fix itself. It got slowly worse and finally two weeks later I went to a Lens Crafters just thinking I needed to have a contact prescribed for the eye. They couldn’t figure it out so they sent me to an eye surgeon specialists with better machines. They found nothing, so they sent me to the ER for an MRI. The MRIs continued for close to 4 months without any doctor being able to tell me a formal diagnosis (I think that was the worst part, knowing something was wrong but not being able to put a name to it). FINALLY a neurologist found my MRIs and told me that my lesions looked a lot like a case of MS. He finally diagnosed me. I have RRMS. Just know that you’re not alone. It sounds like we could possibly experience the same things on this MS journey (which is kinda comforting) and we just have to remember to smile and love 🙂

  • Pam
    1 year ago

    It’s ok to have pity parties every now and then, just try not to stay stuck in them. Pamper yourself, take naps. Find something that makes your heart sing that helps others, and do it as often as you can, whether its an animal rescue, a favorite charity or whatever it is. Helping others keep us from becoming reclusive and wallowing in pity. Most importantly, treat yourself kindly.

    You got this!!!

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