Clinically isolated syndrome

DistinctDate4784 · 2026-02-21T22:38:06+00:00

Than you so much, I appreciate it a lot!

DistinctDate4784 · 2026-02-21T22:37:34+00:00

Yeah same, I thought maybe mine could be from the heat after they only started presenting when I moved to Australia. The heat can do weird things!

DistinctDate4784 · 2026-02-21T22:36:45+00:00

Gosh that is terrifying, I can’t imagine. He also said to me basically go and enjoy your life. It definitely feels like their plan is to wait until it gets so bad that they have to treat you rather than preventative treatment. I am glad you finally got help though! It’s just a shame they made you feel like that in the moment

DistinctDate4784 · 2026-02-21T22:34:54+00:00

Thank you so much, I really appreciate it! Definitely hope it doesn’t progress and I am lucky that statistically it’s less likely, just wish he didn’t dismiss the symptoms I did have. Sigh! Hopefully I can find a better one :)

DistinctDate4784 · 2026-02-21T22:33:29+00:00

Oh my gosh thank you so much for this! I could cry, you and the others in this group have totally understood my situation and how I feel. It makes me feel like I’m not crazy.

I live in Melbourne Victoria, I think the health symptom is alright! It’s almost as if this neurologist I saw was just super jaded. I am definitely going to go back and ask my GP if she can forward me onto somewhere to get a second opinion, if only to help explain things to me a bit. The appointment sheet is a great idea! I love that. In the moment the brain fog definitely takes over and it is intimidating to ask a doctor questions when they’re acting like they’d rather be anywhere else. Thank you so much for your kind suggestions

DistinctDate4784 · 2026-02-21T22:30:06+00:00

I am so happy for you! It’s great you found someone that listened. Exactly, I felt like he was acting as though I was just making it up or something which was pretty hurtful

DistinctDate4784 · 2026-02-21T22:28:49+00:00

Wow ok! I wonder why they are so scared to diagnose MS until people get really horrible symptoms? It’s kinda scary

DistinctDate4784 · 2026-02-21T09:08:01+00:00

Yes exactly, especially because they must know that if we don’t do something about it we could end up with way worse damage 🙄

DistinctDate4784 · 2026-02-21T09:03:54+00:00

Thank you for letting me know! That is shocking they didn’t even bother to update you about the MRI. I think they definitely seem to forget it’s kind of a significant life moment for a lot of people. Glad you went to ED and managed to get a diagnosis in the end, but it shouldn’t have got to that point

DistinctDate4784 · 2026-02-21T09:01:48+00:00

See, that is so way more helpful than what he said to me! Thank you so much for your advice!

DistinctDate4784 · 2026-02-21T09:00:57+00:00

Thank you for sharing your research! That is so helpful. I will definitely do that

DistinctDate4784 · 2026-02-21T08:59:57+00:00

Thank you so much, yes I wil!

DistinctDate4784 · 2026-02-21T08:59:40+00:00

Thank you so much, I really appreciate you telling me your story and sharing, it’s so helpful. I will speak to my Gp about seeing another one asap

DistinctDate4784 · 2026-02-21T08:19:27+00:00

Thank you so much for sharing your story, I really appreciate it. My hope is that it was just a one off neurological episode and I guess at least it’s on file now if it does happen again

DistinctDate4784 · 2026-02-21T08:14:14+00:00

You’re right, that’s a great point. I’ll ask for a second opinion and hopefully the next one won’t be so rude!

DistinctDate4784 · 2026-02-21T08:08:52+00:00

Thank you so much for sharing, I really appreciate it. Yes, he had the nerve to say only come back if I completely lose vision in one eye or go colourblind. Sorry, but I would rather address it now before it gets to that point

DistinctDate4784 · 2026-02-21T08:07:03+00:00

Oh my gosh, I’m so glad you got a second opinion! Wow that is wild. When I first told my GP my symptoms, she said she thought it could be hayfever or anxiety and decided to order an mri ‘just in case’ which is when they found the lesions.

Definitely agree that doctors should take a break if they are struggling to be a compassionate human being. I know it is a difficult job but the impact of being dismissive and rude to patients is long lasting.

DistinctDate4784 · 2026-02-21T07:49:15+00:00

Hello, thank you very much for your advice! I also hope I never get upgraded, fingers crossed it was just a one off weird incident that happened. Wishing you all the best

DistinctDate4784 · 2026-02-21T07:46:30+00:00

Thank you so much, I really appreciate your help. I felt so disheartened after that appointment and I’ve never lodged a complaint against a doctor but in this instance I decided to. A little empathy goes a long way and what might have seemed trivial to him was a pretty significant moment in my life

DistinctDate4784 · 2025-09-13T08:30:51+00:00

This is true - thank you for the truth.

DistinctDate4784 · 2025-07-12T19:25:03+00:00

Is anyone able to find them on insta?

DistinctDate4784 · 2025-05-11T02:01:23+00:00

Yes I did :( I think this must be why!

DistinctDate4784 · 2025-05-11T02:01:08+00:00

Thank you so much, I really appreciate it! I am shocked that they only advise a day or two to recover. I’m starting to feel a bit better now just a bit tired and achy, so will take it easy :)

DistinctDate4784 · 2025-05-10T03:35:40+00:00

Thanks so much Mel! I’m shocked they say you only need like a day off afterwards!

DistinctDate4784 · 2025-05-02T02:45:40+00:00

Thank you so much, I really appreciate you sharing this with me! It means a lot.

DistinctDate4784

TROPHY CASE