? about neuro-opthamalogist exam

[iamlaura]

A little back ground. 45 yrs old, female with many years of neurolgical problems. Tingling, itching with no apparent reason, fatigue,pain, cervical fusion C5-6 with a bulge in C6-7. Head has odd sensation of ripple thru brain. Odd sensations of warmness. Lots of tests with mostly normal results (MRI of brain, EEG's, EGM, ect). MRI of cervical spine was only MRI showing problems, disc bulge and narrowed canal.
On sept. 17, 2004 I was in a store and thought something was the matter with the lighting in there but when I went outside the problem continued. It was as if there were something above me casting a shadow. Went to several eye docs, told eyes were near perfect. After several months (jan. 2005 I believe) started to improve but would still have problems in stores (the flourescent lighting perhaps?)
Went to a neuro-opthamalogist who did a field exam and was told 5% vision loss in perifial. (right eye that I was having problems with) Was told to see him every 6 months. He has a very good reputation but I have a hard time communicating with him as he is very aburpt. When I told him my sight worsened with exhaustion he wanted to know were I had read that at, when I replied I hadn't read anything, it was what I was expericing he told me I would get a diagnosis in 10 to 15 years.
During my last visit to him he had me look at his nose and then would turn my head quickly. He did this several times and then had his student watch and asked him if he saw that. When I asked him what he was looking for and what he found he just shrugged and didn't respond.
My question: Do you have any idea what that exam (the moving my head quickly while looking at his nose) was looking for? I know you can't say what he saw but perhaps you could enlighten me as to what he might have suspected. (by the way my sight has never returned to normal, trouble upon exhaustion and certain lighting) Any ideas as to what the "10 to 15 yr diagnosis" might be?

[SadieSunflower]

I totally relate to you. I've had many symptoms with many normal or non-specific tests as well. I don't know what the heck is wrong with neuro's but they have reputation for being jerks and giving up on their patients. I have only met one neuro in my whole life who I really thought was awesome. I'm surprised that a neuro-ophthalmologist was so difficult. My experience with ophthalmologists has always been relatively good. It must be the NERUO in the NEURO-Ophthalmologist.

I'd totally get a new neuro-ophthalmologists. You already have to put up with enough nonsense as it is with your symptoms, so why pay someone who treats you with disrespect? Sometimes with some people, you have to politely tell them off, and then they will respect you. That is very difficult to do though, and takes some skill.

It might be worth driving out to the University of Iowa or Barnes-Jewish Hospital/Washington University, St. Louis. They have very good opthamology clinics there.

I've had  lumbar puncture. The procedure is quick and painless but the resulting headache took me out off commission for a week and a half. It's not that bad, because it doesn't hurt as long as you are lying down. Also, I am young, and older people who have the procedure don't tend to experience as many problems.

Best of luck!

[Nancy T]

Your problems sound very similar to mine, not so much in the details as in the general picture. I'm 50 and have had odd neurological symptoms--paresthesias, dizziness, Lhermitte's, etc.--for 8 years with no diagnosis of anything. Neurologist all but told me I had MS at my first visit, which shocked the heck out of me, because I was expecting him to say it was migraines! Later, of course, I was painted as a hypochondriac (for having "too many" symptoms and because test results were nonspecific), and the neurologists let me go. I have not seen a neurologist in five years now.

Have you had visual evoked potentials done? I didn't (since I've never had any symptoms to suggest optic neuritis), but my auditory evoked potentials were way-off-the-charts abnormal. I believe that visual evoked potentials can show damage to the optic nerve even if the office exam is normal. Did your doctor tell you you have optic neuritis?

I do have one odd vision thing, which is surely not MS but was still unexplainable by either the ophthalmologist I've been seeing over the past couple of years or the neuro-ophthalmologist that he called in to have a look. When I read steadily looking down for more than two or three minutes, I get vertical ghosting. This also occurs spontaneously (without reading) when I'm tired, i.e., sleep-deprived.

My ophthalmologist did something similar to the test you described: he had me fix my eyes on his nose while he moved an eye-covering thing back and forth rhythmically between my eyes. After a while he saw something and pointed it out to his student--I thought I heard him say "ezophoria"--but whether that was really "exophoria" or "esophoria" I have no idea, and I don't understand those terms anyway. Whatever it was, he didn't seem concerned about it, and I didn't ask.

But you'd think that since you ASKED your doctor a question, he would have been courteous enough to give you SOME answer, even if not a dissertation. Some of them are just too busy, or abrupt, as you say. I'm happy that my ophthalmologist never seems in too much of a hurry to answer a question or listen to me carefully.

I also think it was strange for your doctor to say you'd get a diagnosis in 10 or 15 years. You might get a diagnosis next year, or you might very well never get one. I gave up all expectation of getting a diagnosis years ago. Some people just never get diagnosed.

By the way, Dr. Hagan probably meant to write "medial...eye muscles" instead of "medical," in case you're Googling!

Best of luck,
Nancy T.

[John C Hagan III, MD, FACS, FAAO]

Vision that worsens with physical effort, fatigue and exercise is Uhthoff''s and is strongly suggestive of optic neuritis often due to mutiple sclerosis.  Paste this link in your browser to learn more:

http://www.mult-sclerosis.org/Uhthoffssymptom.html

Your history is most characteristic of MS and this is often difficult to diagnose or only becomes apparent over a long period of time.

The test your describe can be used to check a number of things including function of the medical and lateral rectus eye muscles and nystagmus and the function of the middle ear.

You do need to remain close to a neurologist and a neuro-ophthalmologist (one that you have confidence in).

JCH III MD

[iamlaura]

Thank you for your reply, I found it very helpful. I have seen many neuros and they all say that I don't want to go through a spinal tap. This is the only test it seems I haven't had (most tests have come back normal or insignificate). I don't have any lesions showing on brain and cervical MRI's. I had an MRI of lower back done this morning due to tingling and pain in both legs (started on thursday with no relief yet), will get results next week. My primary doc is very understanding and easy to talk to, she tells me I am not crazy and will stay with me until we get it figured out. My problem is that my symptoms are difficult to discribe and many. Unfortunetly I find the neuros I have seen to be dimissive of my symptoms as if they think I am just malingering. I have had diagnosises from migraine, depression, eplilepsy, ect. My neuro-opthalmalogist has a very good reputation (I don't know if we are suppose to give names but he is Dr Kattah of Peoria) but speaks with a heavy accent I have trouble understanding. I don't know of any other opthamalogists in the area. Perhaps he did the test I described as I told him I had been hospitalized in March and June for mastoiditis and had been on Rocephrin and Gentamiacin (I have a different doctor in Peroria for that)
Again thank you very much, I truly appreciate your response. You've given me some good information to get informed on.

Nancy T, thanks for the reply. Yes I had visual evoked potentials but results were insignificate. That seems to be the worse of it all. Strange as it may seem I actually was relieved when he told me that visual field test showed some loss, at last some proof that something was going on!!!  That I wasn't just making it all up. I didn't get to him until my vision had started to restore but the regular eye docs all said my optic nerve was enlarged.
Sounds like we both have had the same problems as far as being diagnosed I wish you the best in your journey.
Laura