Neuro opthamologist
 

I have first appointment tomorrow am (they offered this afternoon, had cancellation) with neuro opthamologist. My vision is horribel, blurry, double, ghosting, floater (one eye only), silver flashes of light, exteme dryness, etc., getting worse for several years but as with other symptoms, problems have been getting worse over last year. Vision real big issue for me because i cant read documents, prepare legal briefs when i cant see.

Reg opthomalogist saw no problems but i know something is not right...

Any advice re appointment would be greatly appreciated. Thanks

I don't have any advice, but I do wish you luck.

The ophthalmologist that has been seeing me is just a regular ophthalmologist with an interest in neuro stuff. He actually made the initial diagnosis of MG and seems to know way more about it than anybody else that I have seen. He sent me to another ophthalmologist in his practice that does eyelid surgery to see if he thought that an eyelid "tuck" would help me see out better. This guy also seemed to be very familiar with MG, but he wouldn't do any surgery. He said that eyelid surgery for MG was like trying to shoot a moving target since it changes all the time. Both know more about MG than any other doctor (including the neuros) I have been to.

Again, good luck and let us know how it goes.

I agree with Celeste. My neuro-opto was the first to DX me with MG even though my bloodwork was neg. He said he didn't care about bloodwork and it would show positive within a year. He started me on 80mg of Prednisone and my double vision cleared up and has been gone for 1 year. It seems to me a lot of people on this board have more luck with neuro-opto than regular neuros. My eye exam took about 2 hours but when it was over he was convinced it was MG. My bloodwork did come back positive about 4 months later. Let us know how it goes.
Good Luck
Mike

Steph, Ditto on what these guys said. N-O's have very objective ways of diagnosing fatigable ptosis. And they can show clearly when someone has double vision (DV) and what kind it is (binocular or monocular). MG DV is binocular, meaning that if you close one eye, it goes away.

They may show you a series of lines to see how you see them. It's really quite simple!

When the first neuro dismissed my concerns, my ophthalmologist referred me to the N-O to evaluate my ptosis. I had been misdiagnosed at age 10 with lazy eye/amblyopia. And I thought my blurry vision was simply from my astigmatism. The N-O was very thorough and kind and explained that I had DV and why. And that I had MG.

They can also do a Tensilon test, looking at before, during and after results.

Neurologists "could" be more objective in their clinical exams or during a Tensilon test if they used photography. The lens is quite objective and it would give them an objective measure of ptosis before, during and after a Tensilon test or an upward gaze exam.

Just trust your instincts! There could also be more than one thing going on. You can have dry eyes with a lack of acetylcholine but it could also be Sjogren's. He might do a Schirmer's test, if you haven't done one already.

Remember that they often use Atropine drops to dilate the eyes and anesthetics to numb them. Both drugs can make MG worse, even hours later. A cup of coffee might help you to counteract those effects. Caffeine does what Mestinon does, to unknown varying degrees since it hasn't been studied well enough. But since you're already on Mestinon, that might be enough.

The silver flashes of light might be a circulatory issue. So please be specific about your symptoms.

I'm sure you'll have a great appt. and get the answers you need!

Annie

Interesting comment about the caffeine...i had stopped drinking coffee because didnt
LIke tate anymore but recently purchased new espresso machine and have once or twice a day downed shots and i think they did help! I thought must hve been coinciddence.

Coffee is the elixir of life.

Steph,
I hope you're appt. goes well with the neuro-ophthal. But....if it doesn't, don't give up!!!

My 1st visit with N-O sounds like it was similar to Mike's--2 hour long appt. and very thorough. At the end of the appt. N-O was quite sure I had MG. Unfortunately, my antibody panel came back negative and my SFEMG was interpreted as negative. No tensilon test was offered at the time b/c the SFEMG was the "gold standard" for diagnosis.

Seven years of double vision later I was evaluated by an out of state facility. Tensilon test was positive and they said I likely had MG. I've had a variety of treatments, some which have helped my generalized weakness, though the double vision has remained (to varying degrees).

So...my point is, don't give up. Keep on seeking answers. I wish I had ten years ago when this all started. Perhaps my double vision would have responded more positively to earlier treatment. And I wouldn't have had to retire early b/c of my vision issues.:(

Cate

Update had apppointment, was very thorough. He "saw no sign of ocular MG" and suspects my eye issues more related to the lasik mono vision i had done last year (i suspected this was causing issue). I am stillsurprised that doctors do such basic simple tests (if i can close my eyes and squeeze your hand then must not have myasthenic weakness???) which fail to even considr fact that i am able to do so bcs mestinon? Maybe i have become paranoid but i feel as if i have to sell, prove my diagnosis everytime i see a new doctor, as if having MG gets me some sort of payoff?

I cant get lasik mono fixed until MG stabilized even glasses wont help at this point so i will just wait

Steph, Were you on Mestinon when you saw him? And aren't you on Pred? Of course the "signs" of MG would not necessarily be seen. Duh. ;) Was your appt. in the morning when you might be well-rested?

A lot of us feel like we have to prove the MG diagnosis because so many doctors doubt it, even with positive antibodies. The problem, however, is theirs.

Annie

Interesting comment on caffeine. I cut out all caffeine in early September and went through the whole withdrawal headache phase. I am newly diagnosed with MG and it went through me like wildfire. I was officially diagnosed on September 28th after two eye doctors one a neuro suspected MG. Maybe it is time to add the caffeine back and see what happens.

I'd wait on the caffeine! If your doctors want to see how you are doing on Plasmapheresis and Pred, without Mestinon, adding coffee with caffeine "might" not give them the picture they're looking for.

Annie

Yes, i am on 6x60 + 180 mestinon plus 20 mg prednisone and appointment was at 8 am which is why i thought kinda strange that he would say no ocular myasthenia. Not that he wasnt ok but He made comment about sending letter to my neuro and although he didnt say it he actually made me feel like he thought he was some sort of genius that was going to educate my neuro because he figured out i must have pulled off some sort of trick on my neuro. Just stange to me he wouldnt say something like great seems meds are working in that you dont have any ocular MG weakness right now at this moment, i would bet his notes make no reference to consideration to effect of meds.

Oh well, such is what we have to deal with. As divorce lawyer i frequently hear from clients that such and such is not fair, right and i tell them i never said would be fair so i suppose i will just take some of my own advice and i will be even more thankful for this forum!

It is interesting that one ophthalmologist seems to jump on the symptoms and call it MG based on symptoms alone like mine did, and another seems to think that MG doesn't exist. I would be very surprised if you went to my doctor and he called it anything but MG based on what you have said on this forum. I wonder who is correct.
Either way, will his diagnosis make a difference in your treatment since the neuro already says you have MG?

I'm sorry that you had a frustrating day.

No i dont think my neuro will care what this guy says. They dont know each other and i think my neuro is confident in his ability - perhaps the biggest reason i like him so much was the first time i met him was his response when i had told him so many other doctors said it was in my head and i could tell he did not approve of that and assured me wasnt in my head. Not that he believes everything i say and i can tell he is cautious about discerning what is perhaps anxiety driven symptoms (i think my breathing issues) versus genuine weakness, etc. even so he is not perfect but at least i feel like he considers me a unique patient and has even agreed to my suggestions (ie starting mestinon, adding timespan, increasing prednisone) in between appointments.

On a positive note yesterday and today were the best days i have had in awhile...i am thinking the prednisone is starting to kick in...it has been 5 weeks, 3 weeks at 10 mg and 2 at 20 and other than some weight gain (which i think has more to do with my emotional eating issue when bored and too tired to do anything) no sidde effects so far.