Want your opinions on my visit Monday

[Becky559]

Hi everyone, I posted last week with "scared and ask questions" and got alot of information from Quix and Erin and several more. Thanks for your support and opinions. I went to the Neuro-opth about the inflammation of my optic nerves. She said only a few things can cause this and she ruled all out. She thinks I may have just been born with both my optic nerves looking like this. She said my MRI at strength 1.5 was suffiecient enough for her and I did not have any lesions, or tumors, etc... She said for me to come back in four months and she would look at my optic nerve again. I am not sure what to think about her findings. Especially, when the MRI says no optic neuritis and she and two other eye docs say yes both are inflammed.... Also, she said that if I had optic neuritis, that I would not be able to see as good as I could with my glasses and I would have pain. I hope and pray she is correct. Could I have always had optic nerves that appear this way and my vision is just a normal aging process? Well, this is how my visit went and I just wanted to get your opinions on what was said. She also said she may do a spinal if I am still like this next visit. I would be most thankful not to have another illness added to my list, but I am still alittle uneasy, since the first doctor scared me with telling me that his quess would be MS..
Thanks all of you,
Becky

[LATW]

The MRI would show inflammation of the optic nerve. I am not sure if an MRI would show a past episode of ON though.

I've had ON twice.

LA

[Becky559]

Hi, can you tell me what you experienced with your ON? and what did the doctors say about it? Thanks for responding  Becky

[LATW]

The first time I had ON, that I know of, was May 2007.  My vision started to blurr and I had a lot of stabbing pain.  Along with that I had major weakness on my right side.

I went to the eye doctor and was sent for an MRI. The MRI showed an inflamed optic nerve and lesions.

Did not get and MS diagnosis at that point because of a silly neurologist. I had a VEP that was not normal and showed ON. But she was sure no MS.

My eye doctor had me come in every few weeks for a vision field test.  While my ON was active I had vision loss.  Over a few weeks my field test improved.

By September things looked back to almost normal. So I went on with life..Great,,the ON was gone and no MS.

By January the ON symptoms started back up again.  I had pain and blurry vision again. This time significant color desaturation and blind spots.  

My vision field test was worse that it had been at my in May when the ON started the first time. Other MS symptoms with it.

I was sent to an MS clinic and was diagnosed with MS that day.

I THINK I'd had ON before the May 2007 episode because of the stabbing pain and blurryness I'd had in the past. It was not bad enough for me to complain to the doctor.

I have been on Avonex for more than a year now and I have not had a major flare of ON. However I think my eye is trying to act up somewhat right now.

I am on oral steroids and I have heard that is not a good idea for ON but my doctor wants me to be on long term steroid treatment to help keep my symptoms at a low roar.  I am on a very low dose.  

Hopefully that is not more than you wanted to know! :)  But that is my story in short form.

LA

[Karen99]

It is my understanding that even microscopic size inflammation or lesions on the optic nerve that cannot be picked up on an MRI can cause vision problems.  

When I had ON, my vision tests were all good but I KNEW something was wrong with my vision even though the tests didn't detect it.  My eye hurt.  I was seeing colors differently.  My vision was hazy but I was still at better than 20/20.  I was panicked and went from eye doctor to eye doctor.   Only one LISTENED to me and suggested I get an MRI, particularly because I was having other worrisome symptoms.  (I got scared and didn't until I developed double vision a year later)

I don't remember what your other symptoms are, and I am not suggesting you have MS.  What I am saying is that MS can present itself very differently in different persons.  

How do you feel about your doctors explanation?

She'll do a spinal next visit if you're still "like this?"  Like what?  Inflammation like you have now, that you were born with?   This doesn't make sense.  You can choose to accept her explanation or choose to get another opinion.  

Do you feel as though your vision changed quickly or slowly?  I'll go look at your initial post to see if you are having other symptoms.  Take care.  And again.  What are your gut feelings of your neuro-optho's explanation?        

[Becky559]

Thanks for responding and I will take advice seriously as there is something wrong, I just dont now what at this time. I dont really like her explanation, but it doesnt appear that she will do anything different until Oct. when I see her again.  I appreciate telling me your stories about your ON. As I can see, everyone's experiences are alittle different. I am sure my dx will surface as time goes on...Thanks for your help...Becky

[Quixotic1]

This doc seems to be talking out of both sides of her face.  WTF??!

My impression is exactly the same as Karen's.  Maybe your optic discs have always looked like this (ie. I gather "this" means looking inflamed.)  But, if you are still "like this" next time she'll recommend a spinal tap???  Now it could be that what she was really saying is that maybe your optic discs truly have always looked like this - ie. it is congenital.  Whatever.  Could this occur??   I doubt it, having NEVER read anything to say that this condition does exist, but I really don't know.  Saying "maybe you were "born with it" seems to be a witless excuse when the doc really doesn't know.

I lost all trust in her when she said you can't have ON without pain.  That is patently ridiculous.  We all know that ON can occur and cause optic nerve atrophy subclinically - that is "having never caused symptoms."  That is why Optical Coherence Tomography is so useful in following MS patients.  My OCT was positive, and I don't remember symptoms or pain.

I don't know how well the 1.5T picks up optic nerve lesions.  My neuro (who is also a neuro-ophtho) always wants all of his MRIs to be done on a 3T.

And, yes, I agree that lesions on the optic nerve could be invisible to MRI.

I don't think what this doc said makes much sense looking at it all together.  Clearly she has a suspicion that it is truly ON since she is talking about a return visit to think about an LP.

Now for someone else that asked, can the MRI return to normal after ON?  Absolutely.  Lesions can heal.  They can come and go, though they always leave some dysfunction afterward - even when we don't notice it.  It can be measured.  that is the theory behind the VEP always being positive once it is abnormal.

BUT - the VEP is somewhat subject to the technician's skill.  The electrodes must be place right and other conditions must be right for the test to be accurate.  The old way of doing it resulted in a lot of false-negatives.  For the last several years it has be recommended that the electrodes by place in specific places and the analysis be done in a specific way.  I know enough about medicine to know that not all labs/docs/neuros/hospitals etc stay up-to-date with equipment and software.  Not all lab techs are competent.  So the high percentages seen in studies are not really a fair indication of what happens in the real world.  A doc practicing in the real world cannot translate all the study data directly into practice unless he is sure that his conditions and techs are as good as those used in the study.  What about when the tech goes on vacation and they get a floater, temp or someone used to different equipment?

I guess that is a different rant.

So, do you see her again?  I think yes.  She seems to be holding the right thoughts in her head, even though she said nonsense to you.  Since there is the possibility that your "optic discs are abnormal since birth" (something I doubt) I think it would be a good idea to ask her for a picture for your records (both print and digital) for your records.  Then if you see someone else later (second opinion) you will have that data.  If your discs ever return to a more normal appearance, then you'll know the "congential thing" was not true.

I hope this helps.

Quix

[Becky559]

Hi, I have been giving this alot of thought since my neuro opth visit and what you all said. I am not going to wait until October as I am suppose to for a follow up. I cant stand this emotionally. I want to call her back, but what do I ask for as in the different test that could tell us what is wrong with my optic nerves inflammation and blurry vision?  I really dont know what to say to her except I dont feel comfortable with the MRI on the 1.5 level and would like her to order a 3.0 level. What else can I ask for? I seem to feel intimadated  with her and the nurse. This doctor is in Atlanta. I have no idea where another neuo opth is,,,that is close to me or maybe not. I live in NC west and in a rural area. So, we dont have many specialist in any area. If I have to change docs, do you know of any in NC. I have family toward Asheville, Elon, Durham, Duke,but they dont know any specialist in this area ....Help me please!!!!!!!!!!!!!!!
Thanks,
Becky

[Lulu54]

Hi Becky,
Most importantly here we need you to find a way to relax and not panic.  All of us understandn the emotional side of facing this disease but we also know that usually it takes some time and lots of patience to work through the tests and get answers.

You have some great teaching hospitals associated with the universities in NC - get online and research which one might have an MS.  Then make phone calls and talk to their people for names of other specialists.

But please, don't allow yourself to be run ragged by fear and emotion - you will be fine working through this.

my best,
Lulu

[rendean]

Hi,
I just read your posts. If you are indeed close to Atlanta, you can pm me and I can discuss docs in this area that are worth their salt.

I would see the neuro-opth again as Quix suggested. I only know of one in Atlanta with a good reputation.

Good luck with your decisions. I 'm newly diagnosed so I understand the fear and frustration, not that anybody on here will ever forget theirs but my memory is still fresh and raw.

Wishing you the best,
Ren

[Karen99]

There was another discussion here about how one of the forum members had an opthamologist take pictures of the optic nerve for comparison at a later date.  Wouldn't need to be a neuro-optho either.  Just one that has the equipment.  This would be a good idea for you since it could be relevant if there are changes (or not).

Do you wear eye glasses or contacts?  Have you seen your optomotrist (I can't spell this!)   You need to know if there is an actual change in your vision and if I were you, have your vision monitored on a regular basis.    

With that said, LuLu is giving good advice not to panic.  It could be inflammation since birth, but I would cover my bases and get a 2nd opion.  Until that happens, go see an optomotrist too.  You could be lucky and find one who could spend some time with you.  As long as your vision is stable, no need to panic.  The 1.5 MRI has ruled out anything that could threaten your life.

You'll find your way.  Just get your ducks in order.  Be well.

Karen  

[Becky559]

Hi everyone and thanks for the responses. I called my neuro that I use for my neuropathy and ask him what should I do. He told his nurse to have me see their neuro opth in Asheville. So, I am getting a second opinion next week!!! great. I have been wearing glasses now for alittle over a year and it does help most days, but when I have a flare with this blurred vision, it doesnt. I am getting my eyes check every three months and in the last three, they have changed alot and that is what my regular opth here ordered the MRI especially with my optic nerves looking inflammed to him. Then he sent me to this neuro opth in Atlanta, because he felt it was out of his league. One year ago, it was my left optic nerve, now it is both L and R. So, how in the world could I have been born with this. I have never been told I had any optic nerve problems when I would be dilated. I am having problems with my R eye today being blurred, so I am glad to get a second op. I have all my records and will take with me. My regular opth. does alot of testing when you see him,,,and the neuro opth that he sent me to, did none! And charge me $1.066.00 for my short and non sense visit. I cant believe this!

Rendean, I would like to talk about the doc you know in Atlanta. Does pm mean in the evenings?  So please just let me know what you meant.

I do at this point feel panicky because my vision is going and I cant seem to get anyone (doc) to listen. I now understand all of you that talk about this. I do feel better since I will be seeing someone else. I just felt hopeless and that makes me panic..

Thanks for all the support and hopefully I will know where and why my vision is going so
quickly.
Becky

[rendean]

Pm is to  send a private message versus a note. It's a private way of communicating and I can list doctors by name for you if you like.  Using full names on the forum portion is one of no-no.

I'm currently housebound due to a relapse so I can respond at any time.

Ren

[Becky559]

I am so sorry that your are housebound and relapsing. I figured the pm meant something else...lol on me! I didnt realize about the no no on doc listing. Thanks for the pm. I got it just a minute ago. I havent used this forum much and still getting use to it..

Hope you feel better soon.
Becky

[Lulu54]

Its great to know you will be seeing an expert closer to your home and one with perhaps a very different approach.  It does have to be distressing to have the vision loss with no answers from the expert.

Keep us posted on what you learn.

be well,
Lulu