If you are going to a large university, you might look into the medical services attached to your school. Sometimes, they are the best physicians around, and have the best research labs.

The neurologist I saw today really didn't do much but talk with me. I'm set to have a VER and blood work done on the 17th, and they are sending me back to the eye institute for the ON, but now I'm seeing a new doctor (not my decision, I was fine with the other doctor.)

He said that at my age, the memory loss definitely wasn't normal. I don't know, the guy was nice and all, but I think he knows about as much as I do at this point. Hopefully I'll know more by mid-month.

Thanks for getting back to us Pippa. I can understand your frustration having waited for this appointment and having so many questions, only to find the neuro didn't really tell you much, but the VER will decide how much damage (if any) your eyes have had from that episode of Optic Neuritis that you've recently been through.

I think it's an understatement when he said that memory loss at your age "definitely wasn't normal". I truly hope you get some answers when you see the other doctor, and you get these tests out of the way.

Please let us know how you go, and if there's any way in which we can be of assistance to you.

Today I had my bloodwork and VEP (or VER?) It was a lot more pleasant an experience than I thought it would be. Everyone at the hospital was very nice, and the bloodwork was quick and painless.

The doctor that administered the VEP was a real comedian, and he had a student about my own age attach the electrodes.

I sort of inferred that he could interpret the test results immediately, and when I asked him if he could, he said yes, but my Neuro had requested that he get the test results and tell me in person. I was a little upset about that, because it seemed unnecessary when I could know the results of the VEP right now.

The hospital I had my MRI at never sent my results to the neuro either. He suggested that I might have retinal migraines, but I've done a bit of reading on them, and apparently there is a headache involved in a retinal migraine, and the visual symptoms last hours, not weeks. On paper, the official diagnoses is optic neuritis.

I guess I'm wondering what it all means. Is it possible that I had two isolated incidences of ON and nothing is wrong at all? And what about my memory?

The neuro wants me to see another eye specialist at the same place I was diagnosed with the first incidence of ON on Friday. He said if my other doctor questioned me, to tell him my neuro referred me to the new doctor.

I know my neuro is a smart guy with a good reputation in the medical community, but I don't think he really has any idea what's going on. He told me he thinks I might be depressed after seeing me one time. I wasn't even acting depressed. At most, maybe a little nervous, but I wasn't acting unusual. I just feel like the guy didn't even listen to me.

I'll keep you all updated

Thank you so much for getting back to us Pippa.

Believe it or not, I was only thinking about you yesterday. I accessed this site but saw nothing new from you, then YAY! Today's there's an update. I must have some sort of mental telepathy thing going at the moment!

I'm glad you had the VER/VEP because I believe that's the best test there is at the moment to check out permanent damage caused by ON. Naturally I could be wrong, and I often am, but hopefully some-one out there will correct me if necessary. I've had VER/VEPs done myself a few times and the last one was quite funny for me, and I thought I'd share it with you!

I was all wired up to the machine with wires stuck all over my head, but the technician kept saying that his machine was playing up. He kept coming to me and rescrubbing my head, and reapplying the electrodes. He had this weird look on his face like he couldn't understand why his "special" machine was giving out these weird readings.

I told him several times that I'd had ON many times and probably 4 or 5 times in the eye that was giving him trouble, but.....it still never really got through his thick skull that the myelin on that Optic Nerve was so badly damaged, that his machine was not ever going to spit out the "normal" readings that all his other clients so readily provided him!

Even though I've had MS for over 30 years, and been through just about every test there is, and sometimes I've done those same tests many times, it's a very rare occassion when a technician, a radiologist or similar will share their findings with you. I do think it's best that the Neuro explains them to you anyway, especially if there's an abnormality. If something is wrong, the first thing I'd do, and possibly you too, would be to look it up on the Internet, and by doing that we are diagnosing ourselves, and most of us make a right royal mess of that!

One of my neuros also suggested the Migraine thing to me because I have chronic eye pain left over from the last episode of ON, but he proved that wrong by tests and trials of different medications.

I'm not sure what blood work you had done, but I'd be hoping they checked your VitB and also your VitD, as both have proved to be important in several different neurological conditions.

Maybe the other Opthalmo doc is a good idea, but it doen't ring any exciting bells with me I'm afraid. Either you had or have ON or you don't. I can't see another Eye doc seeing things the other one didn't.

But.....in regards to your Neuro......I have known heaps of people over the years since I was first diagnosed with a neurological condition (I dare say you realise by now that it's MS for me). You probably would not be surprised to know the huge percentage of those people who were initially fobbed off with a diagnosis of "Depression" only to be re-diagnosed at a later date with something neurological, where medications may have helped significantly had they been started earlier!

Do wait and see what your neuro says when you go back for your results, but don't give up Pippa. If you're not happy with your ongoing treatment, ask to be referred to some-one different.

We're on your side, and I thank you for checking in. I've been worrying about you, and I'm sure other's have been too!

Thanks for the story, Koala! Bewildering specialists is fun

Actually, I've gotten a whole range of opinions from each side of my family. When I had my first episode of ON, my mom looked it up, and the first things that showed up were about MS. A friend at work told her that it actually might be retinal migraines, so now she's positive that it's nothing worse than that.

My fiance's side of the family are all worried it is MS. When his mom first described my ON to a few other people in the family, three of them sort of looked shocked and told her that I need to be tested for MS. His mom is a nurse and said she can't really find any other explanation for what has been going on.

I'm sort of in between. I've realized there has been a possibility that it is MS from the beginning, but I also know it could be something that isn't serious at all. The only thing I have become fed up with is that (even though no one's said it) I feel like maybe they think it's all in my head, because of the lack of communication between the eye specialist and the neuro. My visual field test and color vision tests showed that I had some damage, but since it's not permanent, it tends to clear up like it was never there within weeks, or even days. Since no one can actually see any physical evidence of what I'm seeing, or the things I forget constantly, what is there to show them that this is real, other than my telling them?

I think that's why I'm worried about the results of the VER. Will it show the damage from my past ON episodes, or since it's cleared up a lot, show nothing? I really don't understand how those work.

I'm really frusterated and just want an answer right now, no matter what that answer might be.

Hi Pippa, isn't it great when all our family members take great delight in diagnosing us because "Great Aunt Winnifred had something just like what you've got, etc. They all decide it's something different, and they all tend to diagnose something more debilitating as their stories beccome more intricate!

Your mother was right about MS and ON often going hand-in-hand, but remember that it's not the only cause. Unfortunately though, ON is often the very first symptom that some MSers get, and it's often the one that will give their doctor the first big clue to the investigations he/she should be doing.
There are other reasons for you to be having these symptoms, but MS obviously can't be ignored. The VER/VEP will show damage from past ON episodes even though it's no longer active. They're very sensitive at measuring slowed responses to visual stimulii and can often detect dysfunction which is undetectable by clinical evaluation, even if the person is unaware of any visual defect.

Because of their ability to detect silent lesions and demyelinating episodes in the past, they're very useful diagnostic tools. A definite diagnosis of multiple sclerosis requires at least two distinct demyelinating episodes, in two different central nervous system sites which are separated by at least one month. VER/VEPs can often provide evidence of these episodes even if an MRI cannot.

Please try not to be too centred on the MS diagnosis because believe me, even though I do have the condition, I'd rather have MS than many other illnesses that are out there! Also please bear in mind that not all MSers are disabled. I was diagnosed 31 years ago, and I'm still very mobile although I've recently started using a cane for balance.

I hope I've been of some assistance to you, and do let us know when you get your results back. I'm sure that if your Neuro is suspicious of MS, your very next investigation will probably be an MRI. In the meantime, you're welcome to come on over to the MS Forum. We have others there who are undiagnosed but suffering from MS type symptoms and in need of advice and support.