Needs some answers!!!

[JoeAnthony]

Hi, my name is Joe im 33 and from NJ. About 7 weeks ago I started to experience blurry vision.  I went to many different eye doctors & none of them were able to help me.  At that point I decided to go to a Neurologist. He sent me for a evoked potential. When I returned to the doctor he told me that the results were abnormal & I finally had a diagnosis. He told me that I had ON. After that he put me in the hospital for 4 days to start steroid IV treatment. It has been almost 2weeks since I was on the steroids. My vision has cleared some but is still to blurry for me to  feel comfortable enough to drive. I also have realized that for some reason it seems to be more clear at night. Can someone let me know how long it took your vision to clear??

P.S. does the ocassional cigarette make this worse??

[JoeAnthony]

Thats what I thought but my employer wouldnt let up on it!!! I felt like regardless of what
is wrong with me its none of there business.  

I hope that you find out soon the answers your looking for and good luck with the Dr. search.

Joe

[sllowe]

You sure DON'T have to tell them anything! And, that is a fact!
You also do not know what is going on yet.  So, it's not a lie by any means.
If anyone asks, you are getting through some tests the Doc has ordered, that's all.

Glad you are doing well.

Keep us posted.

-SL

[JoeAnthony]

Hey there, sorry I took so long to get back to on this!! I went to Mark Bilsky because he was the best around to read my MRI'S and he took my insurance, so that was a plus!!
The lumbar was complete success and it only took one try with no leakage, no headaches or any other side affects... We are still awaiting the results of the test so hopefully everything is ok.. Im returning back to work tomorow and my  eyes are almost back to normal..

P.S.  Do I need to disclose any information about my medical problems to my employer??

Thanks
Joe

[sllowe]

Hey -

I've recently researched Bilsky, among other's.  I've been looking for a 2nd read on my recent MRI's.  There was a discrepancy recently as to whether they were looking at a large lesion in my spinal cord (was also identified last year) or a syrinx.  

You were impressed with him? Care to elaborate?

Let me know, if you can.  Or you can PM me if you'd prefer. You so far so good? No leak? I had mine done at Robert Wood and got a leak afterward - was a nighmare.

Don't forget it's caretaker appreciation day - give your gal extra smooches! lol...

-be well,
SL

[JoeAnthony]

LP went well and I was 100% happy with it!!!! I had it done at Sloan-Kettering Hospital in NYThe . Saw a Doc. there by the name of Mark Bilsky he was a NS. Now the fun part starts...lol, I should find out whats going on with me ..if there's anything at all. I still have some blurry vision, who knows at this point when it will all come back :/ It's been two weeks since Ive finished the steriods and I have to see my eye-doc. in two weeks.

Oh yes they did it undrer flourascopy
Thanks....
You hang tough also

[sllowe]

Hey Joe -

Any success w/that LP yet?  Where you getting it done? (I'm in Jersey too)
They trying under flourascopy?
Hang tough,
-SL

[JoeAnthony]

Thanks to all of you for your concerns & no the questions are not bombarding me!!

     Its hard for me right now..I have been out of work for weeks, not driving & still don't have enough answers. I have to go for my 3 spinal tap this week.  Previous doctors have had no luck with trying to remove the fluid from my spine.. I was told last week from a great doctor that the reason they are having so many problems is that I have very large veins in that section of my back.  They really need this fluid to help determine what else is wrong w/ me if anything besides ON.. If they don't have any luck the doctor will have to try & remove the fluid up by my neck.  So I'm hoping that 3 times is a charm..

    I have had many tests done.. Ive have had countless lab work, MRI's of the brain, spine & neck. I also had a chest x-ray, went to an infectious disease doctor to see if maybe I had Lyme.  The early results are coming in that there is no signs of Lyme!!
Other then that I live in jersey & we all have some form of Lyme.. LOL
MRI's have shown that I have white matter lesions on the brain.. But everything else didn't show anything!!! My chest x-ray was normal & so was the MRI of the spine & neck..


   So with all of this & I try and keep my sanity.  The support form my girlfriend has been amazing, taking me anywhere I need to go, being there for me when I just don't know what to do anymore!!  Most of all understanding me when everyone else does not..

[sllowe]

Hey Joe,

I'm very glad that the ON was diagnosed by a Dr, and that you are getting treatment.  I'm not sure about smoking contributing to problems, but I feel confident in saying that it did not "cause" the ON.  What I'm saying is that you didn't do this to yourself, that is for sure.

So Joe, welcome to our group!  We've got quite the team here, as you've probably already noticed.  Has the Dr mentioned anything else? Has he lined up any other tests? Sent you for labs?  If so, stay w/us, we'll walk you through your next round of things.

If you get the chance, please check out our health pages (above right hand corner). ON is often the 1st sign for a Doctor to start testing to see what else might be going on with you.

I hope your vision clears for you soon.  I hope you are in good hands w/your Doctor too.

Again, welcome - hope we didn't bombard you w/too many questions,
be well,
SL

[santana8]

Hi Again! It was nice to talk to you and your wife today. I done some research on the On reatment trials after we talked. Basically, it says that there is no difference in the visual outcome in the long run between patients who receive treatment and those who do not receive any treatment at all. However, the recovery time can be shorter for those who receive treatment.

It also stated that patients who Presented with a first attack of ON who also had other demyelinating lesion(plaques) elsewhere in the brain at the time of presentation were more likely to develope MS. But also stated that Those who showed findings on Spinal tap like O banding, were more likely to develope MS.

This unfortunately, leaves me stuck right in the middle. I had multiple(10) white matter lesions scattered throughout the brain , but don't know how long they had been there since it was eight months before I received an MRI. My neuro says they all appear to be of the same age, so I guess that is more indicitive of them all happening in one attack. But my spinal tap was negative and showed no O banding.

So Now I am wondering where this leaves me in all of this? I would say straight down the middle, a bad place to be. Like being stuck between a rock and a hard place!

But mainly I am wondering about the different pattern and course of ON that most people on the forum seem to have and what I have had.

~Santana~

[santana8]

Hi,  did you receive steriods after the first bout of ON? You describe recurant exacerbations of ON too! were these exacerbations as sevier as the first bout, and did you receive steriods for them?

I ask this question because I have noticed that most of the people here on the forum who have had ON before, describe exacerbations  of ON. I had ON in the form of Retroubular Neuritis Two years ago and did not receive steriods. I have been healing slowly over this whole time, with no exacerbations so far.

I don't have a DX of MS as of now, but am being watched for new lesions on MRI. For now my DX remains ADEM. I am kind of starting to see a difference in the course of the people who have definite MS DX and  the course that my ON has followed. Once my vision started healing it has not recurred and that is not the typical course I am seeing on the forum with others who have had ON. Don't know if this difference means anything or not, but I would like to hear others opinions on this!

~Santana~

[patf]

I had ON about 3-4 years ago.  As I remember, it lasted about 6 weeks, which seems to be the length of time, most of my exacerbations have lasted.  The vision came back slowly and there were some lasting effects, but they were very minimal. My regular eye doctor was kept up to date and when I saw him for my next regular visit after that he said he didn't see any evidence of the exacerbation. I hope you follow a similar course and fully regain your sight.  I am currently dealing with a double vision problem in that same eye, and I find that an eye patch helps cut down on the strain of trying to see with only one eye.  If you haven't tried that, it may be helpful if you're trying minimize use of the effected eye..
Feel better
Patf