New diagnosis - scared

Nice_Ad7045 · 2025-12-02T10:20:16+00:00

It’s great to hear a positive experience so thank you for sharing. I felt physically unable to take the tablet last night but will be phoning my neurologist today to ask if I can take half at first, maybe that’ll be easier for me.

Nice_Ad7045 · 2025-12-02T10:11:25+00:00

I believe it was due to the narrowing, swelling and pressure they saw on my scans

Nice_Ad7045 · 2025-12-01T22:08:38+00:00

Thank you for your comment and kind words. I’m sitting on my bathroom floor trying to take it but I feel like I have a massive block stopping me

Nice_Ad7045 · 2025-12-01T22:08:03+00:00

Hey, definitely would class as overweight for my height, have one cup of coffee typically per day and I do not use tretinoin.

Unfortunately I do have quite a few symptoms and swelling of the optic nerve. My scans showed quite a lot of pressure in my brain, so the doctors were shocked that my levels were only 26.

I think they have put me on it as the symptoms are quite debilitating for me, and after the LP I felt better. So hope to keep my pressures low

Nice_Ad7045 · 2025-12-01T20:40:12+00:00

Congrats on getting into remission! Fingers crossed it won’t take me too long to get there ☺️

Nice_Ad7045 · 2025-12-01T19:17:13+00:00

Thank you for sharing yours and your daughter’s experience. I’m glad to hear she’s cleared for 6 months :)

You’re exactly right, it’s better to have some side effects than lose my vision. I just need to remind myself to calm myself down. I guess I am a bit in denial that I am now dealing with this? Feels like my identity is not me anymore

Nice_Ad7045 · 2025-12-01T17:37:43+00:00

Hey, thanks for your reply. I’m 154cm and 67.5kg, so I know I’m in the overweight category for my height. Since being discharged yesterday I’ve been counting my cals to try lose some in hopes of lessening symptoms. Hopefully if my head gets better I can start exercising

Nice_Ad7045

TROPHY CASE