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tangiree 03-09-2008 04:47 PM

Optic Neuritis Numerous Times
 
I'd like to say hi! I am new to the board and would like to hear from someone who has experienced something similar to me. I have been diagnosed four times with Optic Neuritis over the past six years. The last three times within the last year. The first three times I had brain MRIs which fortunately came back fine. I've moved to a new town and have a new doctor. He sent me to a Neurologist for a more thorough exam which so far has included a new brain MRI, Neck/Spine MRI and blood tests. The MRI came back showing pretty bad arthrisis in my neck/back. However, I have no back pain so this really surprised me. My blood work came back terrible. I am severly iron deficiency anemic and I was sent to an oncologist who immediately put me on IV iron therapy (8 treatments).

Overall I feel fine exept that in the last two weeks I yet again have been diagnosed with Optic Neuritis. This time it is worse. I have a very large "blank" spot in my right eye plus thousands of tiny floaters that almost appear as a fingerprint over my eye. Plus, something new... when I close my eyes for a a nap or just a rest and then open them I see sparkles. Very pretty, but wierd!

When my eye specialist notified the Neurologist about the ON reoccurance, he scheduled yet another MRI for a month from now. This will make 3 MRIs within two months. As far as I know all of my other blood work ruled out other diseases that can cause ON. It seems as though he is pretty much zeroing in on MS as the cause. I'd just like to hear from anyone that has been through similar circumstances. Has anyone had MS misdiagnosed as arthritis? Is that possible?

Thank you,

sunshine149 03-09-2008 05:10 PM

Re: Optic Neuritis Numerous Times
 
i have had ON a total of 3 times. in 1997, the first time, which brought an MS probable DX came with totally clear MRI scans. after 2 years of clean scans, the lesions began to show up. in 2005 i had ON twice in a month in the same eye. all of things you've described: big blind spot, sparkles etc. i have experienced as well.

hope this helps and welcome to the board!

Bearygood 03-09-2008 06:08 PM

Re: Optic Neuritis Numerous Times
 
Hi, tangiree, and welcome. A case of ON is what led to my dx, just about a year ago. ON can be caused by a few other things but is very, very closely associated with MS. Even when there is no evidence of lesions, it is reason to be watched closely. Have they treated your ON with steroids and has your neurologist ever sent you to see an neuro-ophthalmologist? (If not, you should definitely go!!)

You didn't mention if your MRIs were done with and without contrast and it sounds like you haven't gotten an MRI of your orbits done. Also might be something to ask about.

tangiree 03-09-2008 07:18 PM

Re: Optic Neuritis Numerous Times
 
Thank you for your reply. The first time I had ON I was treated with steroids. The other times I was not. The doctor said that there are conflicting studies regarding the use of steroids for ON. I have not researched that on my own. I guess I should. The last two MRIs were with contrast. Which kind is the best to have? with or without?

Thanks again!

tangiree 03-09-2008 07:23 PM

Re: Optic Neuritis Numerous Times
 
Thank you for the reply. It does help. When scans remain clear, at what point do they make a diagnosis? What should I expect if and when lesions begin to show? Are there any other tests that I should ask them to do? I like my neurologist but sometimes it is really hard to actually speak to him. I am always called by his nurse and usually when I am at work and not prepared with the questions I would like to ask.

One more question... he is very insistant that I have B12 shots. However, the oncologist says that my B12 levels are within the normal range. Is there a link between low B12 and ON?

Sorry for so many questions :)


Thanks again,

Bearygood 03-09-2008 08:07 PM

Re: Optic Neuritis Numerous Times
 
Contrast can show things that wouldn't be apparent without so that is preferential.

Re: steroids, there is no confusion! The study the current treatment is based on is called the Optic Neuritis Treatment Trials (ONTT). What it shows is that if you treat ON with steroids, it should be IV and usually followed with an oral taper. What it concluded was that treatment with oral steroids alone is actually a BAD thing. If the optic nerve is in good shape, recovery without steroids should hopefully be the same as with it although it will take longer. I did not take steroids for the case of ON I had but I was checked very, very regularly during the first few months. I recently had a follow-up MRI of the orbits -- my NO is very thorough. In the majority of cases of ON, the lesion will show up on the optic nerve.

If you haven't seen a neuro-ophthalmologist, I hope you consider making an appointment. There is also something relatively new called Optical Coherence Tomography (OCT) that doctors are starting to use -- it's a picture taken of your eye and although it's not as technologically advanced as it's hopefully going to be, they are hoping it can be used to track progression and actually detect MS early.

There is no timetable for lesions on the brain. To see the diagnostic criteria for MS you should look at the updated (2005) McDonald Criteria. With everything you've been through, I'm surprised they haven't suggested an LP. If your LP is positive and with the separate ON attacks, you would likely get a dx.

Re: B12, there is no connection between ON and the vitamin but there is a higher incidence of B12 deficiencies in the MS population and even without a clinical deficiency, some doctors do recommend this. The most accurate test for B12 is a urine MMA test -- blood tests do not tell the whole story. You also might ask your doctor about vitamin D3. It's not a bad idea to get that level checked but again, even without a clinical deficiency, D3 is recommended for MS. Another interesting thing to have checked through blood is your homocysteine level. This won't be true for everybody but there is also a higher incidence of high homocysteine levels in the MS population. Years before my dx my PCP noted my levels were high and put me on prescription folic acid.

phorsenuf 03-10-2008 04:56 AM

Re: Optic Neuritis Numerous Times
 
I'm still waiting for a diagnosis but I have a question about ON. Last week at work suddenly everything in my left eye got real bright to the point I could barely see out of it for 45 minutes to an hour. Since then I've had pain behind the eye and it shoots to the back of my head. Sometimes its very severe other times it just aches. The vision is a little blurry and it feels swollen behind the eye (if that makes sense). Are these symptoms of ON?
I have a neuro appointment on Friday and I had an MRI last week, the day after my episode actually. It was previously scheduled.
Any thoughts? Thanks!

tangiree 03-10-2008 05:51 AM

Re: Optic Neuritis Numerous Times
 
The only steroids that I ever received was in the form of steroid eye drops about 6 years ago. Where can I find the 2005 McDonald Criteria? And one other question... what is an LP?

Thank you so much for all the information. You have been very helpful.

tangiree 03-10-2008 05:53 AM

Re: Optic Neuritis Numerous Times
 
Of course I am new to all of this as well. However, it does sounds like possible ON to me. In my experiences bright light (even when my eyes are closed) is unusually bright.

Lisa_P 03-10-2008 08:01 AM

Re: Optic Neuritis Numerous Times
 
I've only had ON three times -- the first 2 times were a year apart and the last bout was ten years later, five years ago... I had steroids the second time -- a shot followed by a month of pills, halfing the dose regularly until it was none...

The "stars" and bright light stuff -- [I][B][U]yes[/U][/B]. [/I] I STILL have a problem with light being perceived differently for each eye. I don't notice that very often because I have a very dominant left eye and NO binocular vision to begin with. But when I "switch" between eyes I sometimes notice one is like wearing sunglasses and the other is not. I rarely go to a movie theater because it takes my eyes so long to adjust that the movie starts before I can find a seat!

Bearygood 03-10-2008 08:30 AM

Re: Optic Neuritis Numerous Times
 
[QUOTE=tangiree;3479740]The only steroids that I ever received was in the form of steroid eye drops about 6 years ago. Where can I find the 2005 McDonald Criteria? And one other question... what is an LP?

Thank you so much for all the information. You have been very helpful.[/QUOTE]

An LP is a lumbar puncture, aka spinal tap. It can be helpful in determining MS but it is not always necessary if there is enough evidence. Also, it is not always positive, even with patients who have been dxed with MS so that alone is not enough to 100% exclude a dx. The McDonald criteria can be found a lot of places, including the NMSS website.

Bearygood 03-10-2008 08:35 AM

Re: Optic Neuritis Numerous Times
 
phorsenuf, what you're describing sounds like it could be ON but the affected eye is usually DIMMER, not brighter. Symptoms can vary but in a classic case there will be pain behind the eye, graduating to blurriness and color loss. There should be an examination and one of the tests will be a visual field test -- there is loss in the peripheral vision but you will not necessarily be aware of it at the time. A very unscientific at home test is to pick up something bright orange or red and look at it one eye at a time. That said, not everyone presents the same way -- some people do not even have pain or color loss but that is more textbook. There is also a type of ON called Retrobulbar neuritis (I think that's the correct one) that can a little bit more difficult to dx because of the location of the inflammation.

[QUOTE=phorsenuf;3479691]I'm still waiting for a diagnosis but I have a question about ON. Last week at work suddenly everything in my left eye got real bright to the point I could barely see out of it for 45 minutes to an hour. Since then I've had pain behind the eye and it shoots to the back of my head. Sometimes its very severe other times it just aches. The vision is a little blurry and it feels swollen behind the eye (if that makes sense). Are these symptoms of ON?
I have a neuro appointment on Friday and I had an MRI last week, the day after my episode actually. It was previously scheduled.
Any thoughts? Thanks![/QUOTE]

Bearygood 03-10-2008 08:46 AM

Retrobulbar Neuritis
 
Found the difference -- Retrobulbar Neuritis is Optic Neuritis without swelling of the optic disc. I'm not sure how this is dxed with 100% certainty but there you have it! I have to ask my neuro-ophthalmologist if a lesion on the optic nerve will always be apparent on an MRI of the optics. I'm thinking yes but that might not be the case -- I will check during my next appointment. Just remember though, if your eyes are involved and an MRI does NOT image the orbits, it is certain that it won't show! I'm living proof -- my neuro-op was upset that my brain MRI didn't include it so back into the tube I went for an MRI of the orbits and just as she suspected, it lit up like a Christmas tree!

tangiree 03-10-2008 10:51 AM

Re: Optic Neuritis Numerous Times
 
Lisa P,
If you don't mind me asking, how did they finally determine your diagnosis of MS?

Lisa_P 03-10-2008 11:14 AM

Re: Optic Neuritis Numerous Times
 
After the third bout of ON five years ago. I had to go to the county hospital because I wasn't working and had no insurance. BUT. I lucked out that my county hospital was a major teaching hospital in DFW. I got in fairly quickly and saw all sorts of specialists right away. They gave me a diagnosis after extentive neur-op exams and an MRI, Neurology and an LP, and a neuropsych exam that took hours and hours of cognitive testing. (Found out I have a very high IQ, though!). The neuropyschologist was the first to talk about MS as if it was a fact. It was all a done in about 6 weeks.

I had such a spotty work history and such a major distrust of doctors that I probably could have been diagnosed much earlier had I just had insurance and gone to the doctor! But, to me, it was all just my "normal" and nothing was so major to [U]send[/U] me that route. So. There you have it.


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