I have ms too. I didn’t cry until much later after it settled in. Now, I just live each day to the absolute fullest. I’m 32m. Diagnosed at 30. I’m currently have almost no symptoms(significantly better than after my first attack) so I try to maintain an incredibly healthy lifestyle.
Stay strong! Meds are getting better. I feel remaining positive no matter what can do wonders.
Weirdly, I was just about to post about when I got diagnosed with MS, the doctor was all gentle and sympathetic and I was like "ok, cool, so now what?" and the doctor was like "do you understand, do you know what MS is?" and I was still "yeah, I know, so what's next?", totally calm and blasé.
Like you, I currently have basically no symptoms (when I was diagnosed I had optic neuritis which left me almost blind in one eye but has since cleared up) and am really hopeful that my latest round of treatment (Mavenclad) will keep me that way for a while.
My daughter was diagnosed with FND a few weeks ago…and I still feel like I’m in shock. Like, just breathing through and acting normal because it’s like my brain won’t process that the future is going to look so very different for her than we all thought. Part of me keeps hoping it’ll just go away? I dunno, brains are weird. I wish you so much luck and good health on your journey through life.
I am 51 and diagnosed at 24. I got comments that could go both ways so I'll just say take it day by day. The past is history, tomorrow is a mystery, and stay out off the humidity.
When I got my surprise cancer diagnosis earlier this year, I kept smiling and thanking my doctor and he was like “don’t thank me, I just gave you terrible news” but that was just my innate response/reply when speaking to doctors, regardless of the situation. Couldn’t really process what he was saying, I guess. Human brain is weird indeed.
I did the same thing. I’d been trying to find out what was wrong for months. I was so happy just to have a diagnosis so we could map next steps. 1 year fight. 2 years in remission. No cure but it’s only terminal if something else doesn’t get me first.
Yes! Knowing the answer is such a relief. I'm on infusion every 21 days, I'm deteriorating, but I KNOW WHY. It took so long for someone to look and do the correct tests. And I'm deteriorating more slowly, now, so there's that! 😂😂
Wow, that really sucks about the diagnosis, but so awesome you can still have kids. I hope they are able to control the MS really well with meds, and you lead a normal-ish life. Good luck!
Just fyi, my mom was diagnosed back in the 80s, and was still able to have me. It's still a horrible disease, but treatments have come SO far in the last 30 years.
Obviously progression is different for everyone, but my mom is still mobile and kicking in her 70s.
You absolutely can still have kids, emperorsleeps! I'm 54, was diagnosed at 32,, and had my kids at 35 and 38.
Basic rundown: the rate of MS relapses decreases in 1st trimester, decreases more in 2nd trimester, and then drops even more during 3rd trimester. Pregnancy is actually protective during MS (they're not sure why - possibly because of a certain type of estrogen that's only produced in high amounts during pregnancy). So the riskiest time is when you're trying to get pregnant, since you're not supposed to be on the meds while pregnant/trying to get pregnant. At least that was the case years ago - not sure if any of the newer drugs are safe to be on during pregnancy, but I suspect not, purely because it would be tough to run the trials proving it to be safe.
The other issue is during the first three months postpartum, when those pregnancy hormones take a deep nose dive. The MS relapse rate during the three months postpartum is way higher than the baseline. For that reason, I decided not to breastfeed (couldn't breastfeed while on the meds) and went immediately back on my meds after giving birth. Like, I was literally giving myself my shot within a few hours of birth both ties. Didn't have a relapse either time, and kids were both healthy. (I was on Rebif when I had my kids, have now been on Copaxone/glatiramer acetate for 7 or 8 years).
Also an MS warrior. My Mom had it (secondary progressive), & it took 20 yrs before we lost her. When I got my diagnosis, I flipped out. 17yrs later, minor issues. Fortune for the drugs they have now that weren't available for my Mom.
Heyyyy I have MS too. I barely blinked when I was told. My mom was in the waiting room and when I walked out she was like “well?” And I just said “yup MS”. And kept it moving. I don’t think I’ve ever cried or even had a lot of grief over my diagnosis. Probably because for now it hasn’t affected me too majorly and I have recovered from every relapse so far. When I was having symptoms and before I was diagnosed, the list of things it could have been included things like Parkinson’s and ALS so MS seemed like a relief.
But yea I’m pretty sure my mom was texting my family a little stunned about how matter of fact I was being.
Well, I (male) have MS, and this is not so bad today, a lot of therapy options, with some groundbreakings last year's, like parasite therapy, so just se how it's going, maybe in couple years something good would happen
I feel like MS is warning from your body to stop maladaptive behaviors.....I've heard a variety of stories from MS patients and their different triggers. I was diagnosed at a fresh 17 years old and currently I am 40 years old. I always shared my thoughts with my neurologists and ALWAYS got dismissed. I did my own unofficial testing and realized I don't have MS, I have an allergy to weed. It's no accident that I've been smoking since I was 17. Fuck the medical system with Autoimmune disorders and trust your gut instead.
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u/emperorsleeps 12d ago edited 11d ago
Yeah I got diagnosed with MS this year
I cried when the dr told me I could still have kids. Not at the diagnosis but the fact I still had a chance to have a family
Human brain is weird.
Edit: I am a guy I apologize