I thought I was having a stroke at 20 - My MSAA Community

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I thought I was having a stroke at 20

5 years ago•5 Replies

I was picking up my boyfriend to see the new blockbuster "Titanic" that had just came out in theatres, while waiting for him to come out to the car I realized that I couldn't feel my right arm, then my leg and face, he came out and I drove to my parents house and as I pulled into the driveway my eyes faded to black. So I dragged myself inside screaming "I'm having a stroke" with full bells paulsey in effect(right half of my face drooped) and they rushed me to the ER(coincidentally the same hospital my grandfather was the head of for decades and where my parents 1st met) with my now slurred speech I yelled I'm having a stroke to which the intake nurse said I wouldn't be able to say that if I were so she then asked me who the president was and a few other stupid questions even a child could answer and she said definately not a stroke if you can answer the questions. They did a cat scan and called in a neuro opthamologist who then called in the MS expert neurologist in the area and they said there were still many tests they needed to run but based on my medical history(apparently I had lesions that suggested MS from an MRI when I was 8 but my pediatrician preferred to diagnose me with migraines instead going against the radiologists assessment and the lab work that showed my high white blood cell count because "no, it can't be, she's far too young") and my current symptoms they are confident that I have MS. Apparently the neuro opthamologist could see hundreds of lesions on and around my optic nerves alone and lesions were visible on the cat scan but they set me up for an MRI the next day and tried to do a spinal tap in my room till he realized that I was solid muscle(I was a dancer in college majoring in musical theater) so I also went for another spinal tap down at radiology the next day along with a slew of additional tests over the next week, was put on IV steroids and began to regain some feeling and vision so it was a RRMS diagnosis at that point, well, technically I was diagnosed with an aggressive RRMS based on the severity of the attack that is now just grouped into RRMS. On my 1st MRI it showed hundreds of lesions throughout my brain and optic nerves and 6 lesions along my spine many of which had been there a while, now I have innumerable throughout my brain and abou a dozen along my spine. I go completely blind and lose the ability to walk and talk over pretty much everything ie too warm or cold or any sort of bug/flu or any stress in general, lost all feeling throughout my entire body about 8 years ago but just recently have begun to regain some minor sensation(apparently my own immune system somehow repaired some of the damage it caused and has begun to replace the myelin sheath it previously destroyed) but you would never know there's anything wrong with me unless I told you or it was a hot day but as soon as I am in the AC I'm back to normal. I was told that I had 5 years, 10 tops before I would be confined to a wheelchair so I dropped out of college and worked in musical theater performing as long as my body would allow which was actually 15 years thanks to a change in neurologists and dmd/dmt. I've been in a wheelchair for a short time here and there over the decades but I'm stubborn and bust my butt to maintain my mobility and range of motion every day. It's now been almost 22 years since that life changing night but I am still walking unassisted, can see fine with a little help from my glasses, am married to an amazing man for almost 12 years and was blessed to work in a professional for over 30 years that many people are lucky to get a single show. Did I plan to be retired at 34 when I was a kid, no, but because I had this stupid disease I was able to still work doing what I love and care for my severely disabled parents (mom became a double above the knee amputee due to an allergic reaction to a then prescription medication and dad was a disabled Vietnam veteran who made her seem healthy) till their dying days, things I wouldn't have done if I never hot MS because I would have been accross the country and my family would have tried to keep it from me so as not to bother me lol So MS has been both a blessing and a curse for me, now it's time to find a cure because I would still like to be capable of pursuing my other major(marine biology) and be physically capable of being on a research vessel without having vertigo and going blind from the sun lol

Written by

Shahkey

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