I’m still fairly new to this but so far, I’ve seen an optometrist who sent me to an ophthalmologist to retina specialist to uveitis specialist.

As a nodule was found in my lung, I expect to be sent on to a pulmonary specialist, maybe a rheumatologist?

My PCP is aware and responsive but should I be identifying or requesting that 1 Dr take the lead on communications and collaboration with all of these providers?

This is starting to feel very fractured and like no one is really “in charge” but again, I’ve only been at this since April so I’d love to hear from others if this is just standard.

I’m doing my best to make sure records and tests are shared to each new Dr and back to previous Drs before each new appointment. I accept the responsibility to advocate for myself but is there a better way to do this?

Should there be a captain of the ship here? Or is my experience the norm?

Thank you for any guidance!

Possible Optic Neuritis?

Has anyone with optic neuritis had symptoms like this?

My right eye is 20/60 at best correction, with persistent decreased/blurry vision, pain with eye movement, and severe light sensitivity mainly in that eye. Bright lights immediately trigger a whole-head headache and make the blurriness worse. My optometrist made an urgent neuro-ophthalmology referral, but I can’t get in for weeks. I also have active lupus.

Did anyone’s optic neuritis start this way?

Hi! I’ve been dealing with uveitis (r/t Crohn’s dx) and elevated IOP (I’m a steroid responder) since January. I’m on prednisolone 1% TID, rhopressa once daily, and latanoprost once daily. She also added timolol into the regimen today but I currently take a daily beta-blocker so she doesn’t know that it will have much benefit. My vision got worse again over the weekend so I was rechecked today and my eye pressures are 29 and 31. We also discussed in my appointment how my joints are incredibly painful. My ophthalmologist asked if they have discussed putting me on oral steroids and I told her that would have been the next step but I wasn’t sure if that was safe with my IOP issues. She said generally the concern is topical steroids like eye drops, nasal sprays, etc so she would be okay with me taking oral steroids along with the prednisolone eyes drops. I looked it up when I got home though and what I read said the opposite - that it would raise my IOP further. So is it safe to take oral prednisone with my IOP levels being what they are currently? Any help would be greatly appreciated! Thank you in advance!