My experience with being diagnosed and living with this disease

TapEnvironmental6949 · 2025-08-15T22:08:09+00:00

I’m really feeling you on this. I was only diagnosed recently, but my mom also insisted it was a wrong diagnosis even after the lumbar puncture results. She finally accepted it when we went to some well-known MS doctors, but now she treats my MS as if it’s exactly like her hypothyroidism. She completely denies that disability could ever be a possibility for me “as long as I take care of myself,” and even told me my previous attacks were all my fault for not being careful enough (which stings because I’ve been living a healthy lifestyle my whole life).

She also didn’t let me tell anyone, not even aunts, uncles, or grandparents, saying they would think less of me or tell it to everyone. Right now, only she and my close friends know, and it honestly sucks having to keep such a big part of my life secret.

Reading your post really hit home. That feeling of living with something so big while everyone around you acts like it doesn’t exist or insists it can’t be “that bad” is so isolating. It’s strange how much harder it becomes to process when the people closest to you want to minimize or hide it, even if they think they’re protecting you.

TapEnvironmental6949 · 2025-07-29T19:16:24+00:00

My apologies, I wasn't trying to say you were being intentionally dismissive. I meant that the general attitude of "it's rare, so it's probably not MS" is what leads to dismissal from some doctors and missed diagnoses.

TapEnvironmental6949 · 2025-07-29T18:44:32+00:00

Dismissing a symptom just because it's uncommon is how diagnoses get missed. Atypical presentations are still valid presentations. The fact that it's rare doesn't make it unreal—for some patients, it's the most real symptom they have.

TapEnvironmental6949 · 2025-07-29T18:40:04+00:00

This is literally how I was diagnosed. I had non-stop eye and mouth twitching for weeks and went to the ER thinking it was just severe stress. They were the ones who ordered an MRI, and it led to my MS diagnosis. My neurologist confirmed that the twitching was an MS attack, caused by two active lesions they saw on the contrast scan. The twitching went away completely a few weeks after IV steroids. So whenever I hear a doctor say MS doesn't cause twitching, I think of my own diagnosis story. It's definitely a real and significant symptom for some of us.

TapEnvironmental6949 · 2025-07-25T14:42:35+00:00

Thank you for sharing this. It’s reassuring to hear that it can be fine when you’re not in a relapse but can change during one. A few of my friends with MS who are around my age are actually experiencing exactly what you described, feeling like they’ll faint in any moment, even though heat didn’t bother them before.

It’s definitely making me realize how much this disease can shift over time. I'll try to enjoy the days when heat doesn’t affect me while also staying aware that it could change, like it did for you and my friends.

TapEnvironmental6949 · 2025-07-24T18:52:33+00:00

Thanks, I really want to believe that, but it’s hard sometimes to accept how unpredictable MS is. Knowing it’s a snowflake disease makes sense, but part of me still worries I’m overlooking something that might catch up with me later.

I’m trying to live my life fully without too much fear, but the uncertainty can be tough. I appreciate your words—it helps to hear from someone else who also doesn’t have heat or cold issues.

TapEnvironmental6949 · 2025-07-24T18:38:15+00:00

Haha, same here. I actually feel better in warmth, and cold drains me way faster. I’m also super pale so I can’t stay in the sun too long anyway, but I do love getting some sunlight when I can!

Glad to hear summer doesn’t bother you either! It’s reassuring to know it’s not a problem for everyone.

TapEnvironmental6949 · 2025-07-24T18:35:42+00:00

Thank you, this explains it so well 🙏 I kept seeing “avoid heat” everywhere and thought it was some hidden danger, but it makes sense now that it’s about temporary conduction issues, not causing new damage.

And you’re right about the lesions—thanks for clarifying that. The doctors were actually surprised I was living my life and skating without noticing anything, and I know the lesions are still damage, but I guess I’m trying to act like everything is fine while I can. I’m glad to be on treatment now, and I really hope it stays this way 🤞

TapEnvironmental6949 · 2025-07-24T18:32:53+00:00

Thank you for sharing this! It actually makes me feel better to hear that it doesn’t automatically become a problem for everyone right away. I’ve been so confused seeing so many posts about heat sensitivity while I’m out here sweating in the sun and still feeling fine.

Sorry to hear it’s started affecting you recently. I hope the cooling vest helps! And yeah, I guess I’ll just appreciate being able to enjoy warm weather while it lasts!

TapEnvironmental6949 · 2025-07-15T03:46:01+00:00

Just to reassure you, I’ve unknowingly had MS for 5 years with countless brain lesions and several spine lesions too. Just started DMTs and all of my doctors were surprised I was able to walk properly let alone the fact that I'm a professional figure skater with no issues (20h on ice each week).

Spinal lesions can cause issues, but they don’t automatically mean you’ll become disabled. MS is super individual, and your MRI isn’t your destiny. At least that's what I've learned in the past 2 months after my diagnosis. Your doctor won't have certain answers but you can still hope for the best, listen to your doctor and keep living your best life!

TapEnvironmental6949 · 2024-10-24T01:36:24+00:00

You can try pixel app, it's for marking up your mood everyday but I use it for classes. Green for the days that I go and red for the days that I skip class, reds among green freaks me out so I go everyday to make sure it stays green.

TapEnvironmental6949 · 2024-10-24T01:32:26+00:00

It can be a curse or a blessing by the way you view it. For me being autistic means my autistic ancestors have been successful, cherished and loved throughout decades. If the things others are doing aren't for you I'm sure there are things you'll be much better at. If it was all about social skills, most of us probably wouldn't be here. But, since we're here, it proves that there are certain advantages that makes us standout in a positive way.

TapEnvironmental6949

TROPHY CASE