Just got an email from my eye Dr.
 

Julie,
After consideration of your symptoms and the repeated visual field test that we performed I am recommending a referral to a neuro ophthalmologist. A physcian in this specialty would be best equipped to handle your case. I am recommending a doctor at the Southwestern Neuroscience Institute (www.sninstitute.com) in Las Colinas/Irving. I will prepare a referral letter and also send copies of the visual field test that we performed to their clinic. I will call tomorrow to schedule your appointment and then I will let you know the details. Thanks for your patience.
Dr. B




Can you believe after seeing him 2 times and repeating some of the test and this dragging out over a week he is now sending me to another Dr.? And a Dr that's no covered under our insurance There aren't any neuro ophthalmologist close to me that take my insurance.

What would happen if you request an MRI of your eye orbits with contrast? Do you think he would do it? I would tell him just what you have said here. OR....find an MS specialist and skip the middle man.

LA

I would definitel;y tell him that doc isn't covered, and you need a referral to one who is.

Cherie

I just double checked an there aren't any neuro ophthalmologist with in 50 miles of me that are covered by my insurance. I just email him saying the same thing, lets see if he offers to help me any more by doing an MRI or helps me find an MS specialist or something.

I know it must be frustrating - having all these symptoms and not being able to pinpoint what is causing them.

I have friends that travel up to 200 miles to see their Neuro. If you cannot find one closer that is covered by your insurance you might want to consider making the 50 mile trip.

I hope they can come to some conclusions for you so you can either begin a treatment plan or at least get some closure as to what's causing these symptoms. :hug:

Julie, slskckjebw has a good suggestion. If this is really ON (which it sounds like your doctor suspects), the lesion should show up on the orbits. However, I think it would really still be a good idea to get your eye checked out by a neuro-op, even if you have to travel a ways to do it but at least this will give you a jump start. It sounds like your eye doctor knows it's ON but doesn't feel like he's equipped to treat it (or decide whether or not it should be treated).

I started out by going to my regular ophthalmologist -- thought I'd be walking out with eye drops (!) but instead, I walked out with a referral to a neuro-op. I'm so sorry this has dragged out for you.

:hug: Sorry to hear this is being dragged out for you. Unfortunately, it's not unusual for a regular eye doc to refer you to a neuro-op if they suspect ON. They are more equipped to handle it.

I hope he can get a referral for one on your insurance plan so you can get some answers.

To tell you the truth, I'm scared to have the MRI orbits, they put the scanner on your numbed eye ball. :eek:
I can only search my insurance online up to 100 miles and there is still no neuro-op on my insurance list.

I think your right "It sounds like your eye doctor knows it's ON but doesn't feel like he's equipped to treat it" (or decide whether or not it should be treated).

I think that your insurance will cover you to go to the neuro-op in your area. I would call the insurance company and talk with them. There may be a higher co-pay for an out-of-network doctor but it would be to your benefit to check it out. Especially since there is no neuro-op in your immediate area covered on your plan.

Additionally, should it be ON you really, really need to be seen soon. The sooner you start steroids, the better your chances are for full recovery. Many studies have been done regarding this. I am not sure why your dr did not work with you PCP (at the least) to get it taken care of.

Again, give the insurance company a call and talk with them.

Should you make the appointment with the neuro-op make sure you go to that appointment even if you have to take the kids (sick or not). Your health (and eye sight) is far more important. Your kids NEED you healthy.

julie...have you tried them?

http://www.fortworth2020.com/services_neuro.htm

:hug: sweety. let me know if there is anything i can do to help you search.

The Dr just emailed me and said he called the neuro-op and asked if they toke my insurance even tho they were not on my list of Dr.'s and they said yes they could take my insurance.

I'm seeing this more and more, Dr.'s NOT on the list of Dr.'s but if you call and ask they say "well we can take your insurance". :confused:

This is how it was with the neuro I saw in the ER and wanted to see him in his office, they were not on my list of Dr.'s but when I called them they said they could take my insurance but I would pay 20% of the bill. DH and I opted for the guy I'm seeing now, wrong choose. :rolleyes:

I had always believed this too, and have reserved the use of steroids for any eye or breathing problems. However, it doesn't seem that they are particularly helpful for ON, at least according to the attached links:

NMSS; steroids do not effect the course of the disease, and short and long-term effects of using them:

http://www.nationalmssociety.org/doc...nm_relapse.pdf

NMSS: people treated with oral steroids for ON did not do as well as those who didn't, and the use of them caused an increased risk of recurrence:

http://www.nationalmssociety.org/sit...ures_on_vision

Optic Neuritis Treatment trial results:

http://www.nei.nih.gov/neitrials/vie...Web.aspx?id=47

MX7, weren't they originally thinking it was some other kind of neuritis that was causing this? It sounds like they are waivering now (or is this a new specialist?), but have you researched the causes and whether steroids (or any other medications) might be helpful for the other kind of neuritis?

I think tkrik's idea about phoning the insurance company is a great one. How can they refuse a specialist that is recommended for eye care?? (Then again, I don't know the US medical system...)

Cherie

we used to have a clinic at the club...so i am used to how the insurance works.

if your insurance company gives you a printed list every year...most likey it isn't up to date. dr's drop or add companies all the time. or they will add your company. it doesn't cost them a penny to add. usually just a little paperwork.

don't be afraid to negotiate that 20%. many will take your normal office visit charge.

Thanks, I don't even waste my time with the printed book, they have a list online I use.

OH! NO NO they do not put the scanner on your eye. I have had two eye orbit scans. You just lay there in the MRI machine like any other MRI scan. Nothing touches you! You would get an injection and that is not a big deal. But other than having to be still for a while, it is nothing!!
You are thinking about the test for glaucoma. I hate that test too. But that is done in the doctors office. The
MRI is done at the hospital or other medical center.
The eye orbit scan is nothing!

LA

Thank you for the links (I'll have to go back and read them fully in a bit.
Yes I thought it was ON from day 1 (Jan. 3rd) thats why I went to the ER and than to my neuro. Because I had a broken blood vessel in my eye the Dr.'s didn't think it was ON or even anything more than a broken blood vessel. Than when I saw the eye Dr. I told him about the trip to the ER and the neuro and he said that you can easily get a broken blood vessel if you are straining your eyes trying to see clearly (I had told him I sent most of the morning hold one eye closed and was trying to see if I really was having a hard time seeing out of my left eye :rolleyes: ). The eye Dr. told me at that 1st visit he thought it was ON (or the ON that is the vessels behind the eye that were swollen) than when I when back and saw his wife (also eye Dr) to repeat the VF test she told me she thought it was ON also.

The Dr even told me this and I looked it up online.
http://health.nytimes.com/health/gui.../overview.html

Ok, thanks. I thought it was you who was told that it could be another type of neuritis.

Glad you can get into the doc you need to see. Hopefully they'll nail it this time!

Cherie

This is why it's not a clear case of ON, he looked at my dilated eyes with that scope thing and didn't see and surface swelling of the vessels but said there IS swelling going on based on all the test and my SX's. I'll bet if he saw the swelling him self he wouldn't be sending me to another Dr.


BTW, The links you posted didn't work. I'll bet I can do a search and find them tho.

Keep in mind this would be covered under medical, not vision. Don't confuse the two just because he's an eye doctor....

Thank you, I don't even have vision insurance, just health.

Whhhattt? Julie, who told you that? They don't. :) It's the same exact process as having a brain MRI -- you'd never know the difference lying in the tube. It's just that they image the orbits!

It's weird . . . I've posted those links several times recently, which are directly to the article, but every time I go back to the posting I notice that I have to go looking for them on the site. :confused:

I guess I'll just write the name of the article the next time. :rolleyes:

Cherie

The Dr told me this and I looked it up online.
http://health.nytimes.com/health/gui.../overview.html

I think that greenjeans' point was that it would be covered under medical. A neuro-ophthalmologist is certified in both neurology and ophthalmology. (A medical eye doctor who specializes in neurological conditions of the eye.)

Julie, the link doesn't work but this just doesn't make sense -- besides which, I've had this done twice. Something is not quite right with what you're being told...

This link didn't work. But by looking at, did he refer you to an article in the New York Times? A newspaper would be almost the last place I'd be looking at for information.

Oh, I have eye Dr.'s on my health insurance, I am finding that there are NOT many specialist on my list tho, unless you call and ask them and I get the "we can take you insurance" and the "we know were are not on your list" :confused:

No he didn't tell me about the new york times article, I did a search when I got home to see what kind of MRI he was talking about.

I'm happy to hear this is NOT what is done in this case. :)

Julie, I know this is a drag but it's important to know that although ON CAN be caused by other things, how closely it is associated with MS. If there is not enough supporting documentation for an MS dx, it is STILL reason to be watched closely. Tom has posted that he was part of the Optic Neuritis Treatment Trials (ONTT) -- if you look that up, it will explain a lot, including how steroids should be administered in treatment IF they are used.

I don't wish ON on anyone but confirming it clinically is a good way to get closer to leaving limbo land. Just having it, even without other clincial evidence, is reason to suspect MS. And for those of us who had ON along with other clinical evidence to support it, our MS dx came very quickly.

OK, I'm asking my eye Dr about doing a new MRI, How do I make sure I get a good MRI this time.
My last brain MRI was just under 20 minutes total and didn't have contrast. I have heard some places do scans at 3mm and others do 5mm (and something about a skip :confused:), how do I know I'm getting the best scan done? Does the Dr order the scan at what mm they want seen or is it just what the places offers?

Ideally, you would get a new brain MRI and MRI of the orbits at the same time, both with and without contrast. Having them done together adds only about 15 minutes. (How long ago was your last brain MRI?) If your eye doctor can't do it, your PCP might be able to.

As far as the Tesla, there is an interesting thread about this in our "old place". ;) (I recommend you taking a look at the thread.) I thought that living in NYC I would have access to state of the art machines and I was a little dismayed that the place I've been going to has 1.5 machines. I was also CONFUSED because they told me they "update" every 6 months! It was explained there that it is the quality of the machines (not necessarily the Tesla) and although my question on this is still pending, possibly (because of that "update" thing) the imaging software.

One idea would be to call an MS specialist or neurologist in your area and see what facility they recommend using. Hopefully they'll be forthcoming with a recommendation even though you're not a patient and it's possible that the place you've been using is okay.

(And if you DO use a new facility, don't forget to bring in your old films when you get the MRI done so they can do a comparison!!!!)

Last MRI was just last month (Jan. 8th or 10th, not sure). I will look for that tread, thanks.

Oh and don't most neuro's want to see the MRI films (or CD) them self's? Mine never asked to see them, I even asked if he was going to get them and look it over. He said "I don't need to see anything". :Dunno:

Since your last MRI was so recent, it might be difficult to get a new one approved of the brain -- the orbits should be okay though. That said, sometimes this can depend on how diligent your doctor is! Follow-ups so close (again, brain, not orbits) may be initially denied and hopefully your doctor will appeal for you. The fact that it was done without contrast is good ammunition for them to do that.

A good neurologist will most certainly look at the films themselves, not just the reports.

Sounds like you might need some new doctors, Julie! :eek: Fight girl, fight!! We're all rooting for you. :hug:

My report order says something about a T1 & T2 (Sagittal T1. Axial T1, T2, Flair, DWI, ADC).

I'm curiouse? On my Brain MRI, my eyes are clearly part of the scan all the way down to the point of the basil ganglia. They should be able to see any inflamation of the eyes with the brain scan(?)

I believe that's just all imaging/sequencing talk.

I don't know, I have NEVER seen any of my MRI's.

No, an orbit MRI is a different study. To give you an example using the brain itself, my first MRI was a brain MRI -- however, it was a pituitary study. So, when I got to the MS specialist, back into the tube I went. Another brain MRI but with different imaging. And in-between that, my neuro-ophthalmologist ordered an orbital MRI. I also learned from another board that in an orbital MRI there is a specific thing they have to do with contrast -- I will see if I can find the thread but I had wondered about some use of the word "fat".