HELP--optic neuritis pain, but negative on exam....

Hi everyone,

Forgive my typing today, but my eyes are dilated from seeing ophthalmologist.....

I decided to go back to my ophthalmologist because of all my vision problems since I saw her 4 years ago.

I explained all my vision problems to her such as unable to read LARGE BLOCK paragraphs, sunlight etc.
She then asked me a few neurological questions and if I had been diagnosed with MS or not.

She then did my eye examination and absolutely nothing had changed.  Still she said I was at +1 for needing bifocals for reading, but she said due to my neurological problems "it would probably make my vision worse."

After dilating my eyes about 2 minutes or so, my "back of the eye pain immersed" which is the pain I always get.  She then came back into the room to look at the back of my eye and said the nerve was fine.

Can you have optic neuritis NOT VISIBLE to even an ophthalmologist?

I did not have the pain until after she dilated the eye, so I feel it is still optic neuritis.

Any help is appreciated.....

terri

[Quixotic1]

Oh my goodness!  Another idiot for a doctor.  We covered this "myth" in the Lies My Neuro Told Me.  It is lie #35.  Here is the exerpt:

35)  Your eye exam is normal so you don't have optic neuritis.

       Actually we hear this one all the time and most recently from a neuro-ophthalmologist (in name only!).  When the ophtho looks in the eye one of the things  he is looking for is an abnormal optic disc.  The optic disc is the circle seen and is where the optic nerve enters the back of the eye to spread out around the retina.

In many cases of optic neuritis - inflammation from an attack on the myelin of the otpic nerve - the optic disc becomes pale.  This paleness represents loss of nerve fibers within the optic nerve.  It is one of the classic signs of optic neuritis.  HOWEVER.....(you knew this was coming, didn't you?)  in people with confirmed optic neuritis the disc will show changes ONLY 60% OF THE TIME OR LESS.  That means that almost two thirds of people with known optic neuritis will NOT show changes.  This information is ALL OVER the medical literature.  How come some eye specialists don't know it??  Come on!  This is basic stuff.

I will repeat that.  64% of people with confirmed optic neuritis have a normal exam!

Other tests that can confirm the presence of optic neuritis if the optic disc looks normal are an MRI focused on the optic nerve, a VEP, visual field testing and OCT (optic coherence tomography).

Remember this:  A normal optic disc on physical exam DOES NOT AND NEVER HAS EXCLUDED THE POSSIBILITY OF OPTIC NEURITIS!!!

Ginosmommy's doctor understood this point and diagnosed and treated her for optic neuritis even though the exam was normal.  This was good and proper.

How can a specialist not know this???!!!!!!!!!!!!!!

Quix

[johnniebear]

The Dr can only see a small part of the nerve.

Have you had an VEP  yet?

I had two rounds of eye pain without any effects to my vision,   after two weeks or so it just seemed to fade away.

I you notice a difference in color from one eye to the other,  let your Dr know.


Take Care
John

[Ginosmommy]

When I lost vision, so to speak - as Johnniebear said I could not see colors, faces, or words, my ophtamologist could not see anything wrong with my optic nerve. She had to send me for an MRI which still really did not show anything wrong with my optic nerve but obviously I was having optic neuritis. She even diagnosed me in the office and sent me solu-medrol infusions that week.

[Quixotic1]

Oh my goodness!  Another idiot for a doctor.  We covered this "myth" in the Lies My Neuro Told Me.  It is lie #35.  Here is the exerpt:

35)  Your eye exam is normal so you don't have optic neuritis.

       Actually we hear this one all the time and most recently from a neuro-ophthalmologist (in name only!).  When the ophtho looks in the eye one of the things  he is looking for is an abnormal optic disc.  The optic disc is the circle seen and is where the optic nerve enters the back of the eye to spread out around the retina.

In many cases of optic neuritis - inflammation from an attack on the myelin of the otpic nerve - the optic disc becomes pale.  This paleness represents loss of nerve fibers within the optic nerve.  It is one of the classic signs of optic neuritis.  HOWEVER.....(you knew this was coming, didn't you?)  in people with confirmed optic neuritis the disc will show changes ONLY 60% OF THE TIME OR LESS.  That means that almost two thirds of people with known optic neuritis will NOT show changes.  This information is ALL OVER the medical literature.  How come some eye specialists don't know it??  Come on!  This is basic stuff.

I will repeat that.  64% of people with confirmed optic neuritis have a normal exam!

Other tests that can confirm the presence of optic neuritis if the optic disc looks normal are an MRI focused on the optic nerve, a VEP, visual field testing and OCT (optic coherence tomography).

Remember this:  A normal optic disc on physical exam DOES NOT AND NEVER HAS EXCLUDED THE POSSIBILITY OF OPTIC NEURITIS!!!

Ginosmommy's doctor understood this point and diagnosed and treated her for optic neuritis even though the exam was normal.  This was good and proper.

How can a specialist not know this???!!!!!!!!!!!!!!

Quix

[addicted2harleys]

Okay.  This is what I thought, too.  I am having this exact same issue right now.  So, do we go see another ophtho and request these tests or go back to the same one and ask for them?  How do we ask for the tests without stepping on their egos...I mean toes?

Addi

[Karen99]

Hi Addi.  Did you mention your vision problems with your neurologist today?  A neurologist will often take a peek of the optic nerve, but as said above, a pale optic nerve cannot always be seen.  Possible optic neuritis may be another reason to consider IV SoluMedrol.  

I read with interest your posting on your visit with the neurologist today.  I was wondering why USC would not be a possibility for you but you answered that question.  I went to UCLA for a 2nd opinion, which they validated.  

Glad to see that things are on track for you now. :-)

[tjj3761]

Thank you everyone,

Yesterday afternoon after I posted, it took me hours for my dilatation to go away.  I then started having muscle spasms etc. on my right side of body, so I had to take a muscle relaxant.  

I had to drive about 8 miles home on a sunny day.  Before I left the ophth office, I had to ask for those sunglass coverings they give out so I could get home.  

After my exam, she said, "see you on a year."  

Quix, you are right, I knew in my heart it was optic neuritis.  I definitely knew after she dilated my eyes, when that deep pain in my right eye started up almost instantaneously.

I am going to get a copy of her office dictation for my records.  I am sure it will not say too much though, because these doctors just do not want to be in the crossfire in anyway.

I wanted to say to this physician about ocular dysmetria, but I was wanting her to say something.  I had a VEP several years ago, but she did not suggest anything further.

Anyway, I appreciate everyone's help......Thank you!

terri

[lmeiser45]

I am so interested in this conversation now.  This summer I was having excruciating eye pain that started in both eyes and huge vision problems in my left eye.  My right eye is bad normally, so I don't think anything of bad vision problems (Kerataconus)  I always rely on my left eye because I can see well with it.  In saying this, something was happening.  I noticed it more when reading print on the computer screen, zig-zags of floating print, discolored on the screen, moving around. I went to the hospital, thinking something was horrible, he laughed at me.  I went to 3 different medical doctors knowing something was wrong.  The last one said there was some sort of infection, and gave me eye drops.  (NONE OF THE OTHERS CAUGHT IT).  But... this cleared up the infection, but not the pain and blurry vision I was having out of my good eye.  When I mentioned it to my neuro in October (which was when I was diagnosed because of headaches - beginning with my eye pain) she thought for sure it was Optic Neuritis.  She said hands down everything I explained was that.  When I want to the Neuro Ophthalmologist, he said no, it wasn't.  My optic nerves are just fine and everything is perfect (besides my bad right eye).  He looked at my MRI, and said everything was fine.  I did a couple of tests in his office, but just said, see you in a year, but no Neuritis here.  I know that was the beginning of my MS.  From July last year until Oct. - horrible headaches/eye pain, couldn't even get my head comfortable on the pillow.  I went to my regular doctor, she gave me an MRI thinking Chronic headache, called me the next morning and told me I had MS 10 minutes before I opened the door to 26 kindergartners.  Not a good morning.  I do believe with all my heart that it was what it was, and nobody believed me.  So, from what I hear above, Opt. Neur. can happen without proof for the dr's?  

[addicted2harleys]

Hi, Karen - I did mention my vision problem to my neuro yesterday, but it was not discussed specifically.  It was more as a whole with all of the symptoms that I am having.  He didn't take a peak at my optic nerve.

After sleeping on things and talking to someone about IV Ig and the side effects, I am swaying more towards getting the SoluMedrol instead.  Getting a bunch of peoples blood parts seems really risky to me and I am thinking it should be a very last option.

I was really hoping my referral for USC would happen, too.  It looked like a wonderful place for me to get some help.  When that flopped, I called my insurance.  I told them what was going on and they told me about UCLA.  They also said with a referral I could be seen there.

I called the neuro dept. at UCLA.  I confirmed that they accept it and asked how to go about being seen.  I also told them I was not in LA county, but SB county.  They told me what to do and I began the process.  So when my neuro told me what he did about getting in there, I was surprised.  I have not given up on it yet.  I plan to make some calls today.

In all honesty, I do not see how I can go to Mayo.  I do not have the funds.  So unless some miracle happens (like getting my SSI approval NOW...lol), I don't think I will be able to go anyway.

So, as far as the eyes...I was considering a referral to a neuro-ophthalmologist.  Should I proceed with this or go back to my regular ophtho and request further testing...VEP and/or OCT?

>>>I went to UCLA for a 2nd opinion, which they validated.>>>

That is wonderful!  I know that one other person here on the forum got hers at UCLA, too.

>>>Glad to see that things are on track for you now. :-) >>>

Thank you.  ;0)

Addi

[tomohawk]

Hi guys

im a 16 year old student at school still working hard at becoming a pilot (starting in 2 days)
yet about 6 months ago i started developing eye pains, which carried on for about a week or 2.
I woke up one morning and got ready for school, my eye was hurting badly but was bearable half way through the day I started getting some vision loss and called my dad.

that same day we went to the ophthalmologic and the doctor was sure that it was ON, they put me in hospital and was on IV steriods for a while (5 days or so), they then sent me home as all pain and vision had returned to normal.

2 months after that i developed it again in the other eye, same process...it has now been 3 weeks since i got out of hospital and i starting to have pain in my opposite eye again :|

I eat healthy and take vitamins every day almost... from a few things that i have researched it looks like having a natural diet and taking regular vitamins, as well as having a lot of sleep and relaxation can help as vitamin B-12 deficiency can lead to ON

tnx guys
brandon
so i will change my diet and keep you guys posted

[COBOB]

About 40% of the time, there are no observable signs on the clinical exam of eye with optic neuritis.  Sometimes, the damage is so far back on the optic nerve that the the pale edges of the optic disk do not develop.   I had a negative exam, but a positive VEP and MRI showing Optic Neuritis. .

Bob

[Lulu54]

Hi brandon and welcome to the forum here.  You have posted on a pretty old thread - if you want to get several responses you will want to start a new thread.  I'm sure many people here would be happy to talk to you about your experiences with ON.

As for the B12 deficiency, I don't know that it is so simple.  It certainly won't hurt you to eat healthy .... good luck and keep us posted.

be well, Lulu