@JaMS 

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JaMS

Newly diagnosed + annoyed with "helpful" humans. An intro and a rant.

In early September, I was diagnosed with rrms. I'd been having gnarly migraines for about a year, when I'd never had them before. I was actually sent to a physical therapist for them which helped. Then I woke up one day and my legs were numb. The numbess eventually spread to just below my ribs. I was having other symptoms as well, tingling, dizziness, heat sensitivity, exhaustion, heavy legs, ms hug. After 3 ER visits, 9 MRIs, lumbar puncture, and a bunch of blood tests, my new neurologist made the diagnosis. I kinda saw it coming. I did lots of internet research about my symptoms. Plus, lesions in the brain and spine is a bit of a give-away. I did a SoluMedrol infusion series a few weeks ago. Gotta say, it kicked my butt. Lucky me, I spent my 39th birthday in an insomniac daze. The plan is to start me on Tsyabri. Now, I know people mean well. But I am so over the, "Oh, my aunt/next door neighbor's cousin/barista has MS and they're fine!" comments. Just, no. Stop. Most annoying though, is something my brother just said. Previous to all this, I was lowkey active. I don't exercise regularly, but like doing activities with my family (husband + daughter, 6). Think zoo, festivals, day trips to coast, parks, nature walks. But I mostly like to hang at home, reading or doing a house project. Considering all of this, my brother made the flippant comment, "This [MS] might really play well into your personality." ... What the actual frick!? No, actually. Being too exhausted to do basic household chores, play with my daughter, take a shower, pick my kid up from school, does not play into my personality. Being in pain with muscle spasms, a throbbing eye, and migraines, does not play into my personality. I was too shook to say anything in the moment. Anyone else have wild things that people say to them?
@adamslilith

My grandma said "oh but you also got a b12 deficiency.. so I'm sure that's the reason for you symptoms, you'll be fine once the injections work" my dad "I'm sure you just need new glasses. That's the reason for you problems" my boss "oh my niece got MS too. I mean she's absolutely miserable.. but she's fine, so don't worry" a colleague "oh it's no big deal, there are great treatments for MS" a friend "oh but that's not too bad, is it?" Another friend "what did your symptoms look like exactly? I once had blurry vision too, what if I have MS as well!?" believe me, you're not alone..

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@NKaur

‘Just live life and carry on like nothings wrong’ is the most obnoxious comment I have received

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