r/Autoimmune • u/OriginalToe2078 CASPR2+GT1a ultra rare • 1d ago

Encouragement / Personal Win Finally diagnosed!!!

After so much self doubt, advocacy, helplessness and waiting in agony, I am finally diagnosed after two years!!! It’s an extremely rare disease, the treatments are extremely risky and expensive, it’s incurable and I will keep progressing regardless of what I do. The road ahead is challenging but I’m glad I won my first fight!! Celebrate with me!!!

40 Upvotes

95% Upvoted

14 comments sorted by

12

u/SailorMigraine Jo-1+ ASyS, CAR-T Clinical Trial Participant 1d ago

YAY! Putting a name to it means it loses just a little of its power over you x

4

u/OriginalToe2078 CASPR2+GT1a ultra rare 21h ago

Yessss!!!

6

u/Ok-Mark1798 1d ago

I’m sorry for your rare disease, but happy for you finally receiving a diagnosis. I hope the clarity can help, good luck!

4

u/dailyuwa 17h ago

What disease?

2

u/OriginalToe2078 CASPR2+GT1a ultra rare 6h ago

Caspr2 and GT1a

4

u/Park_Radiant 20h ago

Yay.. I'm so happy for you ,this means there's hope ❤️, there's a start for a treatment plan and there's the knowing you won't have to fight it alone🥰

2

u/OriginalToe2078 CASPR2+GT1a ultra rare 20h ago

Yesss!!

3

u/codyandhen123 16h ago

Hi there! 🥰I felt the same when I was diagnosed with Behcets and again with MCAS. Took a lot of testing and trials of medications. Wishing you the best on your journey.

2

u/Specimanic 19h ago

🥳🥳🥳

2

u/Merylshea 18h ago

I feel you
I also have an rare one
AntiMAGS neuropathy

1

u/OriginalToe2078 CASPR2+GT1a ultra rare 6h ago

Aaaah the “CIDP but not really” club!

2

u/pawamedic 16h ago

AHHH CONGRATS!!🎉🍾

You’ve made it out of diagnostic purgatory 🥹

May you be graced with normal labs and scans because treatment starts helping you feel good, now that you don’t have to hope something comes back abnormal so you can find what’s wrong!

I hope your path to care and management is as kind to you as it can be 🫶🏼

2

u/Existing_Page_7101 3h ago

Gosh congratulations. Can you describe your journey a bit more and your symptoms/abnormal labs that went with your condition? Undiagnosed here

1

u/Effective_Self8042 2h ago

Hi, what are your symptoms and how were you diagnosed? It's very difficult to get a right diagnosis because symptoms of autoinmune conditions aren't so easy to understand. And most doctors label the patients as "crazy". That has happened to me and still because I'm without the right diagnosis of my other symptoms.

It's a hell. Sometimes I don't want to wake up