Looking for more suggestions

[Luongo]

Thanks to everyone for weighing in... my ambiguity has turned this into a bit of a mess but I appreciate the input. I think what I'm going to do now is wait for the results of this chest x-ray and after that I'm thinking I should just have a general appointment with my PCP, because there's so much crap going on between so many different doctors and tests I'd like to get wrangle this whole thing together with a single person if I can.

For whatever it's worth, my other symptoms are/were sleep disturbances, neck pain and stiffness, hyperreflexia, and an inability to not 'zone out'.

[Redwings]

I've had many other tests with optometrists and neuro-opthamologists so that has been pursued and I'm not sure what else I can do. Some tests (the ON ones I mentioned in the original post) I pass. Some tests (an ERG I mentioned elsewhere) I fail miserably. An ERG, from what I understand, isn't really used heavily in diagnosing ON or related to MS, so again, I'm open to other suggestions because this whole cast of characters has absolutely no answers for me. It's almost been an entire year with my vision like this so I'm not optimistic about my current neuro-optho's advice that it will probably just go away on its own. This is as much a source of frustration as anything.

This is a place to start.

My recommendation about the optometrist was not as part of a diagnosis, but to assess whether there's anything available to help you function better visually with the symptoms you have. If there isn't, then there isn't.

The ERG is a good piece of information to follow here, not only for the sake of your vision, but also maybe as a clue about how your test results are leading to dead ends. It's an easy test to use as an example because there's a limited number of implications and none of your other doctors (i.e., the ones who aren't eye docs) are going to follow up on it.

So if you're willing to use your ERG as an example, we'll need to know some details that haven't had to come up yet. So if you can provide the information, the most helpful is the details of your ERG for each eye -- the actual waveform numbers.

Also, there's sometimes a statement on a printout of the data about a reference range or a one- or two-word analysis of the results -- that's helpful. Usually there's not a separate interpretive report because it's a simple test and the doctor who orders it does his/her own interpretation. If there is a report, we would need to know exactly what it says. And, in the the same vein, it's the most helpful to know exactly what the ophthalmologist said in your medical record about your physical exam and the ERG result -- the exact quotes, which can be different than what was said in the exam room.

And to compare to, we need a detailed description of your visual symptoms.

All of that will, of course, tell what the test means and what the implications are. The rest of it will allow us to follow the doctor's line of thinking right up to the dead end. The ultimate answer may be that it's a dead end, but the details are necessary to see if anything got left out and how things got disconnected.

That's a lot of personal information to give us, but if you're willing, there might be some clues and suggestions in there somewhere.

[jazzgirl]

Good luck, Luongo! I do hope you get some answers soon.

BTW, I'm hyper-reflexic. It served me well when I was dancing. . I've had diagnosed MS for 32 years now, and while I am no longer able to dance (or walk), I still enjoy grooving from my wheelchair!

[Luongo]

Redwings - Well I should be getting those x-ray results from the neuro-optho (she's the one that ordered them) later this week so I'll try and get some of that information when I talk to her. As for what my visual symptoms are like, this is a pretty good example

http://upload.wikimedia.org/wikipedi...tisExample.jpg

This is what you get when you look up optic neuritis on Wikipedia, and this is what really got my fears going last December. I can't really describe it with words... it's not what I would call blurry, I pass vision tests 20/20 and I pass visual field tests well too. Things are 'sparkly', much worse so in the dark. My entire visual field is also obscured with floaters. I know floaters are not uncommon, but it seems more than coincidence that the eye problems occur alongside these massive floaters. Again, I've read that floaters are not part of ON/MS, then again I read people who say they are, so I don't know what to make of it.

jazzgirl - My dancing skill rivals that of a rotting jack-o-latern so any changes in that department might actually be an improvement.

[Redwings]

Hi Luongo:
What you need from your neuro-ophth are printed hard copies of your ophthalmology records: all of the exam notes (which are the descriptions of your physical findings with assessment and treatment plan -- these can be handwritten or printouts of electronic medical records), your ERG printout, your visual field printouts, your OCT printout(s). In looking for clues, you need the actual, hard data, not the doctor's verbal explanation of the hard data.

I know that floaters can be very frustrating for people who really want their vision to be perfect, but there's no evidence that there's any medical significance to yours. An eye full of floaters due to disease has other obvious, significant, specific physical signs. The fact that your eyes don't have those physical signs is the indication that your floaters aren't caused by a disease. If you learn more about the anatomy and the physiology of the eye -- including how floaters form -- it will make more sense to you why the floaters and other visual problems you're having are a coincidence.

Your other visual problems occur alongside the floaters because the floaters are in the pathway of your visual input. It's the same principle as looking through a window that has spots on it. It's impossible to see through the window without also seeing the spots. If you're seeing, you're going to have to see the floaters because they're there.

With rare exception, there is no connection between floaters and ON or MS (anatomy and physiology explain why.) You've read people who say there is, but you've read people who are wrong. My bet is you read those opinions on forums, blogs and personal websites by people who don't know the facts and have made assumptions to try to explain something they don't understand. You read it on the Internet, but it isn't true. Consider the source. There's a reason why none of the reputable medical sources ever (except for that rare exception) mention a connection between floaters and ON and/or MS.

It will be interesting to see if your ophthalmology records show any more clues for you to follow.

[Luongo]

Thank you very much... I'll try and get those reports. Admittedly, I'm a 'bad' patient in the sense that I really don't know what questions I should be asking and what else I could/should be doing. If she's not busy, I usually ask my mother to come with me to appointments not only to ask questions and stuff but also as a second set of ears to interpret what the doctor is saying.

[Luongo]

Chest x-ray came back normal (surprise, surprise). Neuro-optho's advice: we'll give it more time and see if it goes away (verbatim). IT'S BEEN ALMOST A **** YEAR. Is this acceptable advice? I've been to two neuros, a PCP (not my own), and this neuro-optho and all have told me to 'see if it goes away and set up new appointments as needed' or variants thereof. On one hand, this seems completely irresponsible to tell someone who has abnormal tests to just sit tight. On the other hand, this is 4 doctors who have told me this and maybe I should defer to their professional judgement even if it seems like negligence.

I got the ERG results from the neuro-opthos office. Unfortunately, its just a form letter and there isn't very much specific information, but I'll type verbatim what it says and maybe it will help.

"ERG REPORT

TESTING CONDITIONS: The ERG was obtained from each eye under binocular stimulation. The responses to each eye were reported using different flash intensities using the Epic 2000 system with a manual ganzfield. The standard ERG protocol currently recommended by the International Society for Clinical Electrophysiological of Vision was employed.

IMPRESSION: It is unclear to me why there is significant amount of noise in his waveforms, however the gestalt review of his performance appears subnormal. Purely scotopic waveforms fall far below the 90th percent confidence interval. They are not entirely extinguished but they are severely reduced. Combined maximal response in the right eye is also reduced far below the 90th perfect confidence interval. Sporadically the left eye shows an extinguished A-wave but a preserved B-wave. I am unclear why this would happen in isolation. Purely 0 decibel flash photopic performance is also severely reduced. Finally fusion flicker amplitudes are severely reduced.

In summary, despite the fact that these are poor testing waveforms for analysis, they do appear to display severe reduction in both rod- and cone-mediated responses. Clinical correlation is required."

Now this may as well be in Portuguese because I don't understand a word of it (although emphasis on "severely reduced" doesn't sound good). Does this say anything to anyone?

[maximumlite]

Luongo,
I have had high ACE levels for quite a few years usually in the low 90's. At my Soc Sec hearing the SS doc was convinced I had either Sarcodosis or TB and was so convinced the judge order'd me to go right to the Doc's for a TB test and it was neg. 3 neuros ago she said I had neurosarcodosis, with all the differing thoughts on what the levels meant they can and did a DNA test,

I did'nt like the outcome and no sense in saying what they came up with as your mind is like mine racing with bad thoughts, but they finally said MS and not sure if the high levels of ACE and MS are related. I have asked that they not do anymore ACE level tests as I have enough to worry about, but talk to your doc about DNA testing and just maybe you can put this to rest and give yourself a well needed break

[billiejeane]

Luongo,
I have had high ACE levels for quite a few years usually in the low 90's. At my Soc Sec hearing the SS doc was convinced I had either Sarcodosis or TB and was so convinced the judge order'd me to go right to the Doc's for a TB test and it was neg. 3 neuros ago she said I had neurosarcodosis, with all the differing thoughts on what the levels meant they can and did a DNA test,

I did'nt like the outcome and no sense in saying what they came up with as your mind is like mine racing with bad thoughts, but they finally said MS and not sure if the high levels of ACE and MS are related. I have asked that they not do anymore ACE level tests as I have enough to worry about, but talk to your doc about DNA testing and just maybe you can put this to rest and give yourself a well needed break

What r ACE level tests for?

[Spydre]

There is one thing on the ACE levels list that jumped out at me as a possible cause for some of your symptoms. When was the last time you had your blood sugar levels checked, or had your urine checked for ketones or sugar in the urine?

[maximumlite]

Julie

I'm not sure what the tests are for, when the neuros were saying not MS, my doc kept testing and I think it was for saecodosis till they did chest xray that was neg. and neuro said neurosarcodosis, the DNA test said wierd mutant strain that effects the organs and the way he always goes at the liver for tests, I think something with high iron deposits in organs. My mom died at 62 from undetected cirrosis of liver till it was to late and my liver has been out of whack for years so was surprised they did Rebif for me

[Spydre]

OP where did you have "muscle twitches" and when? That could go a long way in leading us the direction of what your symptoms may stem from, and what tests you may need. Muscle twitching without muscle weakness is generally not a sign of MS. My doctor called it general myoclonus - it can be caused by several things, medication, or at times, even nothing.

I'm guessing the ERG was to test for retinal dyfunction. If you went to a neuro opth and Optic Neuritis was ruled out. I'm not aware of MS causing retinal difficulties, but I could be wrong. The only eye related symptoms I've heard have been ON, because of the nerve, not the actual mechanics of the eye

[Luongo]

There is one thing on the ACE levels list that jumped out at me as a possible cause for some of your symptoms. When was the last time you had your blood sugar levels checked, or had your urine checked for ketones or sugar in the urine?

OP where did you have "muscle twitches" and when? That could go a long way in leading us the direction of what your symptoms may stem from, and what tests you may need. Muscle twitching without muscle weakness is generally not a sign of MS. My doctor called it general myoclonus - it can be caused by several things, medication, or at times, even nothing.

Urine, would have been many years ago. I was tested for diabetes August 2010, however.

The "muscle twitches" have started since December 2010 and still continue to this day. My weirdo eyesight and these twitches are the only symptoms that have been consistent the whole time, although others have come and gone in this time. My neuro labels them "muscle fasciculations" (is there any difference between a fasciculation and a twitch?) and they occur over my whole body, pretty randomly. One particular night they were so bad that I tried speaking out loud the body part that was twitching (left arm, right leg, buttocks, eye, etc.) and it was occurring so fast that I couldn't even keep up saying it out loud.