ON back? I am confused - need help from those with experience

[salamandertom]

I had my first bout of ON that started in November. Then it got worse again in mid January - started with a "blind spot." Since then, I have had an appointment with a neuro-opth who has told me that I will probably not regain any vision back in my right eye, so it has been pretty much stable, meaning the vision doesn't really get much worse or much better though it does still vary a bit. At the doctor it has pretty much held at 20/25 with my corrective lenses in.

So, about a week ago I though I noticed some funky stuff - like I kept seeing a white spot in my center vision in my right eye. Then about 5 days ago there was pain in my right eye. I had not had pain with either ON incident before, but this seemed like what I had heard described with ON pain. Plus, the vision was getting worse. Today, there is really no more denying it - the vision in my right eye is definately worse - most noticeable driving. It hurts when I move it, but not all the time. My colors are definately off between the two eyes, more significantly than they were before.

My question for those with experience with recurrent bouts of ON - does this mean I am having a flare? I assume I need to call and speak to my neuro right? Another question, and this is more of a logic based one. I don't have insurance. I really, really don't want to go back to the opthomologist or the neuro-opth to confirm what I already know is happening! I haven't even begun to dent the bill from the opthamologist. They didn't know what it was at first and ran all these tests in Nov. I really don't want to pay more money to keep confirming something they can just tell. I mean, isn't that just stupid? Any thoughts? What is the cheapest way for me to deal with this? Thanks.

Oh - and HAPPY MOTHER'S DAY to all the Mothers and mothers to be reading this!

[nthnjacob]

Hey Sasha,

I have dealt with ON that came and went and I noticed it came with an addition of leg weakness and hand weakness. I assume it was a flare, even though it seemed mild. It sounds like you may be having a flare as well. I would definately call your nuero and let them know your situation. And if they absolutly have to see you. I know with my nuero, the info I tell her just goes in the computer, unless they want to treat me. Happy M-day!

[RoyaleMSer]

Having MS is not cheap. Having recurrent ON is even worse. But you need to see your neuro-optho to find out if it is in fact ON. You can't diagnose it yourself, and there is nothing you can do for it yourself. But if it IS, your neuro-optho can put you on steroids. And yes, it is considered a relapse and your regular neuro should be told.

I know having no insurance sucks as I am without too, but sometimes the doc is necessary. If you go to the ER, you might be able to qualify for charitable help. I know I had to call and discuss my situation with them AFTER I had been and gone. Another thing you might think about. You can always ask for a payment plan too.

[salamandertom]

But if it IS, your neuro-optho can put you on steroids. And yes, it is considered a relapse and your regular neuro should be told.

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Oh I definately agree with you on all of the sometimes seeing the doctor is not avoidable. The problem is that I will not be able to see the neuro opth for at least 60 days unless there is a cancellation and I know that my neuro will not put me on steroids unless it is "very bad" (quote from them - not me) b/c I get tachycardia from prednisone and they have already said that I would have to be inpatient with solumedrol and it would have to be "dire" circumstances. I guess I will just have to go in and see the neuro and have them evaluate me at first.

Thanks. This has just made me even more determined to get on my states high risk plan for insurance. I just don't know how to pay for it.

[Redwings]

Hi Sasha:
So sorry that you’re having more eye trouble.

You asked for input from people with experience with ON. I’ve had quite a lot of experience, so I think I qualify. Coincidentally, I’m having a bout of bilateral ON myself right now and I’ve had about 60 episodes over the years. Even though I just did a Solu-Medrol 3-day, today is the worst vision day I’ve had since this episode started last week. Being in the thick of things, I think my perspective is pretty good and based firmly in reality.

Here are my thoughts.

1) Make a definite assessment of the situation. It’s obvious you’re confused. You’re asking if you’re having a flare even after answering your own question by describing sufficient evidence that you are. You said it yourself: “Today, there is really no more denying it.”

2) Assuming it’s ON, decide whether or not you want to treat with steroids. Everything else you do will be driven by this choice and you must make it independently of every other decision. A week of valuable time has already passed, so this choice will have to be made before the doctors’ offices open on Monday morning.

Research has shown that most people get most of their vision back after an episode of ON. But recurrent ON – especially in an eye that already has unresolved damage – puts you in a different category. And you’re going to have to decide how important your vision is to you and what you’re willing to do to intervene for it.

If you can't take high-dose steroids for other health reasons, you're almost completely out of options for ON. Although harsh, the situation is what it is and you'll have to find a way to cope with it. I hope you have family and friends around you who you can rely on during a difficult time.

If you decide not to treat with steroids, there isn’t much else left for you to do except ride it out. Of course you should call your ophthalmologist and neurologist to report the episode. It appears like you'll be conferring somewhat for confirmation and peace of mind in deciding not to treat. Medical professionals usually assume that a patient wants medical assessment and will recommend that they come in. That’s why you must already have decided what you want to do before you call. Be open to recommendation, but make sure that a change of plan comes from a conscious choice based on evidence, not a whim of second-guessing or self-doubt.

3) If you decide you want to treat with steroids, call your neuro-ophthalmologist first. Do NOT NOT NOT call your neurologist first. Your neuro isn’t trained or equipped to evaluate your eyes. Call your neuro for help only if you can’t work out something with the neuro-ophth or then maybe a general ophthalmologist. Your money will be best spent with the right professional the first time.

4) If you decide you want to intervene with your episode, admit to yourself right now that you can’t do it alone and that medical care is going to cost money. Recurrent ON has the potential to continually cost you money. But there are ways to keep the costs down. You don’t need a lot of expensive testing – and it’s especially helpful here that you’ve already had tests done at the neuro-ophth to establish your baseline.

But ON is still a clinical diagnosis. If you want a diagnosis, you must see your doctor in the office to establish that diagnosis and get on a treatment plan. So yes, you have to go back to the ophthalmologist for a medical confirmation of what you already know is happening. No competent medical practitioner is going to rely only on your self-assessment of what the problem is. If you want to use a doctor’s professional license, skills and judgment, you also have obligations and have to follow the rules. To believe otherwise simply isn’t realistic. That’s why you must already have decided what you’re willing to do before you make the call. (It's also possible that what you have isn't ON, but given your history it's a reasonable first assumption.)

You don’t need an MRI or a VEP, but you will need an office visit with the neuro-ophth. That’s the time to establish with the doc that you can’t pay for anything other than the office visit and possible meds. Hopefully the doc will understand the situation, go with the flow and give you as little grief as possible. But do be prepared and have a plan for what to do if that doesn’t happen. The doc will probably recommend a follow-up visit but, frankly, you can skip it if you can’t afford it. Your goal is to get the problem addressed. And follow-up rarely ever changes the outcome anyway.

If you and the neuro-ophth determine that steroid treatment is appropriate based on the outcome of the exam, you DON'T need expensive IV steroids. High dose oral prednisone (tablets or liquid) is being prescribed more and more often for ON, and the cost is pretty reasonable, especially from Walmart. Taking oral steroids is one thing you can do for yourself at home, assuming you can take them...

Although you'll have to pay for an office visit with the ophth, consider also that there will be value later in having the episode diagnosed and documented in a timely manner. This applies even if you don't treat the ON.

If you can’t work something out with your neuro-ophth or a general ophth and you still want to be treated with steroids for ON, THEN call your neurologist. It won’t be optimal, but it can get you taken care of. An emergency room visit is expensive but might be worthwhile IF you can get an uninsured, charity rate. The problem is that the care you might get there for ON is quite iffy. ON is too special and rare for most ER docs, and one might be hesitant to prescribe high-dose steroids for a patient who already has a history of it and specialists they've already seen for it.

It would be so nice to have things go smoothly, but we have to deal with reality the best way we can. My years of experience have shown me that recurrent ON requires decisiveness, a lot of self-discipline and the ability to handle panic. For someone as new to this as you are, it all might look harsh. But with so many things that can’t be controlled, tough love and planning are the only things that have given me a fighting chance for so many years. I hope they work as well for you.

[salamandertom]

Thank you Redwings. You are right, I know what is happening - I just don't want it to be happening. I have two finals left - one tomorrow and one on Tuesday - I really just need this to hang on until Tuesday at 10:30 a.m. - and then I can deal with it. BUT, after reading what you wrote - i know now that all the hard work in the world at school won't matter much if I cannot see. I want to see, and I want to be in the best health I can be in. SO, I will call and do whatever they want me to do tomorrow with the neuro opth. Thank you - you are right. My vision and my health matter as more than those exams - my professors will let me take them later. First thing tomorrow I will call.

I will probably have to be inpatient for the steroids b/c I had tachycardia with prednisone - but I will deal with it.