I don't know where to start - but I do hope I can pull a little information out of all of you, if you don't mind it, that is.
I am currently undiagnosed. My main issue is that I have no insurance. My children and I are preparing for a big move from NY to TX in July, and well - finding a way to get the MRI both my primary care Dr in Texas and my Ophthalmologist here in NY want me to have is just not something I can tackle just yet. I posted a while back with my list of symptoms.
Anyway - I have been speaking with my Ophthalmologist a lot recently because my eye problems have returned. All last summer my vision was blurry, and 2 to 3 times a month I would get scintillating scotoma's (never with a migraine) and it just drove me crazy. At the time she wanted me to get an MRI - but I could not afford it. Over the winter the problems went away... so I dropped it.
Now, they are back. My left eye has a blurry spot in the side of my visual field. And I am finding it hard to focus quite often.
My question is this:
When you deal with optic neuritis - are your troubles consistent? Will your vision be more blurry then less blurry - or is it ALWAYS consistent? She basically wants the MRI to confirm retrobulbar/optic neuritis... and I agree - but still... I just find myself needing to ask these things, because I cannot afford to do anything more than that at this point in time. Some days my left eye feels tender. Some days they both do. Mostly it is the blurry vision that bothers me - the inability to focus well. (And that blurry spot - like a negative scotoma in my peripheral vision.)
I appreciate your time in reading this!
PS - have you found anything that helps your eyes when they are like this?
I've never had Optic Neuritis, but I believe the symptoms CAN be temporary. But temporary can mean anything from a few days to months. I believe that IV steroids are the treatment for this. Hopefully someone with experience with this will pipe in. I'm only saying what I've read.
You and your children may be eligible for Medicaid. Perhaps you can look into this. If not, many hospitals will reduce payments for people who have no medical insurance. MRIs are expensive, but if you send them anything, like $5.00 a month towards the bill, they won't send you to collections--as long as you send something every month. If you need an MRI to get diagnosed, you may also qualify for Disability and Medicare, so it may be worth it.
I recall reading also that oral steroids are sometimes used for optic neuritis. If you can't afford the IV route, maybe you could try that. Anyway, good luck, and I hope your eyes feel better soon!
Avonex started 11/07,
Stopped 4/10 due to no insurance.
Hi, Lisa. Re: Optic Neuritis, it can present in different ways, ranging from the textbook pain/blurriness/color distortion to silent. However, if you do get blurry in the first place I don't think it's unreasonable to assume that it would be constant, not intermittent. When blurriness presents, it's often the last thing to come about but sometimes it's also the first thing that makes someone go to the eye doctor. It usually progresses, then hits a curve and then slowly returns to normal (provided there is no real damage to the optic nerve). That's how recovery from ON happens in general -- it reverses the way it came but again, it depends if or what type of damage there is to the optic nerve. Some people do not get blurry but the visual field test will show that there are blind spots.
If there is no damage to the optic nerve, the prognosis for recovery is the same as if you took steroids but it will be slower. However, if you DO take steroids for Optic Neuritis, you do NOT take oral steroids by themselves!! The correct protocol is a course of IV steroids followed by oral or nothing at all (and nothing at all would really only be if the optic nerve is in good shape). Treatment today is based on the results of a study called the Optic Neuritis Treatment Trial (ONTT). The results of the study seemed to indicate that treatment with oral steroids alone increase the risk of getting ON again.
Re: insurance and a dx, that's an issue. You really don't want to get a dx before getting insurance so be careful! As far as the MRI, I believe the MSAA offers one free MRI a year to eligible individuals so you might want to check that out.
Back to your eye, I would strongly suggest you go to a neuro-ophthalmologist. There are other things that can cause visual distortion but ON or not, it sounds like your regular ophthalmologist suspects neurological involvement.
My ophthalmologist has referred me to a neuro-ophthalmologist - I just cannot afford it right now. And I have put pursuing testing and such on hold until my children and I are settled in Houston. It is just too much for me to deal with at once.
It just bothers me. My eyes are persistently blurry - I don't know if I made that clear. (Well, they have been for over a month now.) It just seems like sometimes the blurriness is worse than others. And that scotoma in my visual field (like a blurry spot that stands alone) is always there at this point - has been for over 2 weeks now. (I had blurry eye issues ALL last summer - March to November.)
Does your (anyone that reads this that has had it) ON seem to be made worse by the heat? Maybe the warmer days is what has brought mine back? I cut the grass the other night - and it seemed even worse the rest of that evening. Now it is still bad. (I am just frustrated.)
I am just trying to figure all of this out - without jumping to conclusions - and the eye dr. does want an mri - but she knows I can't deal with it financially right now.
I am just looking for any information. And I appreciate everything you all have told me so far! (If anyone can add more - I want to hear it!!)
Lisa, I understand the affordability issue but I urge you to go to a neuro-ophthalmologist NOW. I hope that everything is okay and whatever you're experiencing is temporary but better to be safe than sorry. Perhaps they'll be willing to work out a payment plan with you. Getting an MS dx or other type of dx is not urgent but vision IS.
I have not been diagnosed with MS but am being monitored for it due to the fact that I have had four bouts of Optic Neuritis. Here is how my ON presents itself... First I notice a tired or heavy sensation in my eye, sometimes with pain. Then within a day or two I notice a blurred out area in my peripheral vision and sometimes in my line of sight. I also experience hundreds of floaters (dark floating spots). These are more distracting on bright sunny days. The first three episodes completely cleared up within a couple of months. However I am still having lots of blurred vision since my last diagnosis several months ago. My doctor has elected not to treat it but to let it clear up on its own. However, I am now having an MRI every three months (brain and spine) and being monitored by my neurologist. I hope this info helps you in some way. Take care of yourself.
That is a huge help. Because that is almost identical to what I am dealing with. The eye feels very heavy.. but some days, or hours it is worse than others. The blurry vision is always there at this point in part of my visual field - and sometimes it is harder to focus altogether than others.
I do have a lot of the floater things as well.
I just can't afford an mri yet - but my doctor in Texas is going to try and help me with that.
I appreciate all the help and replies SO much you guys. Thank you again.
Ugh, I hate the floaters! So annoying! My neuro and GP both indicated there's not much that can be done about them. If anyone has any ideas if it is possible to get rid of them, and how to go about doing so, please share!