Please, can anyone help?

[Invida]

Hi, everyone. How are you? I hope with all my heart that everyone here is doing very well today. I just posted this in my other thread, but thought I might start another one. I hope that's okay.

I really need some help. If there is anyone here who can please read this and give me their opinion, I can't tell you how much I would appreciate it. I am having a really hard time seeing today and I'm very scared and I don't know what to do.

The day before yesterday I was sent to the emergency room again. My vision had been whiting out almost completely and I think that must have been making me panic because I felt like I couldn't breathe. I explained my symptoms to the ER doctor and he dilated my left eye and then looked at it with the light. He said he thought he could see a change in color in the disc and said maybe it's optic neuritis. He gave me a very large dose of steroids and some potassium. He tried to call my neurologist, but he told me that my neurologist only goes to that hospital one week a month and if it's not on that week, he won't even take their calls. He was going to have me transferred to another hospital to try and help me, but after contacting my ophthalmologist, the ophthalmologist told him he didn't think that was necessary and he said to have me come in the next day.

I went home and didn't expect anything to improve, but the next morning I realized things weren't so blurry and the whiting out wasn't happening anymore. Things looked better for the first time since all of this started. I wondered if it could have been the steroids. Throughout the day, my vision started to slowly go funny again. I went to the ophthalmologist and thought it was nice of him to get me in there, but he did the same thing that he did on my prior visit. He told me everything looked great and that I didn't have optic neuritis. He said that even if I did, steroids wouldn't have improved anything for weeks. He didn't want to let me ask any questions and just didn't want to hear anything I had to say. I left feeling really hurt and even more confused than ever.

Now today my vision is so bad again and I still don't know what's happening. Does anyone know of any reason why my vision could have cleared up for that little while there? Was it just a coincidence and the steroids wouldn't have done anything at all? If that's the case, why would the ER doctor have given it to me?  Could I have unconsciously made myself feel better, even though I didn't think anything was going to improve? I hope someone can help me. Thank you.

[Invida]

Thank you. I'm still waiting for the appointment to be set up and I have some more MRIs to be done. Bless you.

[brittkl]

A neuro-ophthalmologist will definitely know what to do. I've never been to one (the woman I saw was an ophthalmologist who specializes in strabismus and double vision), but from what I've heard appointments with them last about 1 1/2 hours because they do so many tests. I'm sure that varies with the doctor though, just as it does with neurologists. I would make a point to mention you need someone to figure out what's going on because your problem is persisting and no one seems to help. I'm also not sure what other tests need to be done, so I can't help you there.

As for what to do in case of an emergency, I have no idea. It depends on the emergency, I suppose. If you suddenly go blind, go to the ER. If your problem is worsening each day, contact the neuro-ophthalmologist and ask if there's any way to see him/her earlier. Worse comes to worse, go to another ophthalmologist who has good reviews online, since they tend to have regular openings and can usually see you sooner. Tell them the problem is worsening and ask for more thorough testing.

I totally understand why you want to move things along, but unfortunately, the more specialized a doctor, the longer the wait to see him/her. I wanted an earlier appointment too, but I had to wait over a month. I just had to sit back and wait, and, sure enough, the time came and my problem was addressed. It's been a little tough waiting for results, but that seems to be the name of the game. Try to make do with it and focus on other things while you wait.

[Invida]

Hi, guys. Thank you. I'm so sorry it took so much effort for you to find someone that would help you. It makes my heart ache knowing how much pain people are in and it can often be tough just to find a doctor who is willing to simply listen.

Do you think the neuro ophthalmologist will know what tests to do? Is there anything specific I should ask for beyond an OCT? What do you do when you have an emergency with your eyes? I don't think going back to the emergency room will help.

[brittkl]

Yep, same here. I went to a regular ophthalmologist who spent five minutes with me, said my eyes looked fine, dismissed videos of my eyes being out of alignment, and wouldn't explain my "borderline" results on the OCT and asymmetry of my optic nerves (which turned out to be congenital actually). I saw another who specialized in strabismus, and she spent time with me, doing way more tests than the other one did. She detected an esotropia and exotropia in my left eye and suggested it was neurological, and she explained my OCT results from the previous ophthalmologist. Seeing a new doctor made a HUGE difference.

[PeninaD]

You need a new opthomologist.
Let me tell you, that can make an incredible difference.
We ended up being sent up to one of the optho professors at Mount Sinai (NYC) for clearance for Gilenya use (looking for macular swelling), and after months of other many neuro doctors all looking in her eyes almost daily, he did some deep peering, quite a few crazy tests with black/white spinner, ultra bright lights and red color testing, then sent her for some high-falutin photography that plain as day showed the narrowed area of the optic nerve.
All tests that no other opthomologist ever did on her.

[Invida]

Hi, brittkl. Thank you for replying.

I saw the same ophthalmologist. The neurologist sent a referral request to my doctor to get me in to see a neuro ophthalmologist, but I'm still waiting on that.

[brittkl]

I've also heard that sometimes optic neuritis can be behind the eye (retrobulbar), in which case he wouldn't be able to see it. I believe you need a visual fields test and an OCT to help understand what's going on.

[brittkl]

I mean the one you saw previously. If so, maybe that's part of the problem. Maybe he's not being careful enough and you need to see someone who specializes in what you're going through, probably a neuro-ophthalmologist.

[brittkl]

Did you go to the same ophthalmologist?

[Invida]

Can anyone also tell me what the possible side effects are of high doses of steroids? Thank you guys again.