When my neuro referred me to another neuro in Boston, I googled him and found out that his main interest seems to be ocular myasthenia. I thought that was a bad fit, because I have only very mild eye symptoms.

I just wanted to report that his ocular expertise turned out to be a big help to me. He watched my eyes move, and I don't know what he saw, but he said they move in a way that he's only seen in myasthenic patients. It helped him confirm my diagnosis.

I'm just reporting this in case it might be helpful to someone else. I never would have thought to seek out an ophthalmologist or ocular specialist, since my eye symptoms are pretty low on my list of bothersome symptoms. But I'm grateful it worked out the way it did.

Abby

I too considered my eye problems as low complaints on the scale of problems bothering me.

As it turned out, it was the main symptom, the doctors could readily and visual observe and gave aid in directing their focus towards my dx.

Who would have guessed. Apparently, the eye vision problems of blurred vision, how pupils dilate, vertical double vision =, ocassional attacks of blindness - all which I considered as minimal are really grave matters to be taken very seriously - I didn't know or realize that these were early waarning signs of something seriously going wrong.

Hello-fog brain at work - plz pardon my stupidity!

i am going to a eye specialist monday. my left eye is constantly blurred, i dont know if its the ms or diabetes doing it.

Abby, That's why I'm so annoying about people gathering up info from all sorts of sources like neuro-ophthalmologists, pulmonologists and cameras! You never know where the "key" will come from or what will trigger a neurologists to "get it." I missed my ocular symptoms for 41 years because I thought it was my "normal." When I saw the N-O in 2000, it was easy for him to figure it all out and obvious to him that what I had was MG.

Tresa, I like the neuro-ophthalmology guys because they have "tools" they use, besides the clinical exam, to determine exactly what is going on. I found mine to be more objective than many neurologists. And, no, you are not stupid, silly.

Clarkstar, So does the blurriness continue when you close the other eye? With MG, the blurriness or double vision would go away with closing one eye. Also, have your doctors ever checked you out for antiphospholipid antibody syndrome? People with that often have eye trouble (smaller veins). It's a common syndrome in people with autoimmune diseases, including MS.

I'm just beyond thrilled that you have a diagnosis, Abby. It DOES give people a lot of hope.

Annie

hi annie. no, the symptoms remain if i close my other eye. i need them to check me out better thats for sure. i only get worse not better

I'm starting to catch on. So strange that my severe symptom--the truncal instability--should be so useless in diagnosing me, but the subtle effects on my eyes should hold the key.

I knew you, and the others here, would understand what a huge relief this is for me, to get diagnosed. It changes the whole way I feel about the disease. I'm hoping that the day will come soon when the others on this forum who are still in limbo can share similar good news.

Abby

hi,

My N-O, has seen my eye problems double ptosis, nystagmus, droopy eyebrow and the fact my eyes don't move properly and talks to his students about my MG. However he works for a World Leading Expert who categorically states I dont have MG so his diagnosis is overturned.

Im glad its helped you but for me its done zip! LOL

Rach

Rach and AnnieB3 I seem to be in the middle somewhere of yes or no the Neuro-Op (N-O) did something that convinced me which was the prostigmine challenge. With some of the docs leaving me feel beat up and less able to fight back and say "I know what I know and my body is sick with MG or something very much like it!"

The senior doc Dr C in neuro optho who did the red light to show me and her the degree of doubling did not redo that test but left it to someone clear over in pediatric eye area to test. That person did it differently after the injection. That she did it differently and there is was just enough doubt by a couple other docs before that exam set me up so they wouldnt believe me when I said how it DID work. The prostigmine injuection not only cleared my vision excellently but also worked great for my body.

I know that getting this orbital myositis on top of the eye symptoms created a compicated situation. The doc said the inujection would sort that out. But it didnt seem to. If your vision is very compromised by both it seems to me it would take a top N-O to sort it out. What I got was Dr C who at least said you can have MG elsewhere but not in your eyes. But she did reexamine me she let the brand new student fella who is on the the docs who in the on the side of the detractors. I didnt realize this till I called back to say the pain in my face was spreading at which time I even realized the eye tech was even a prob as I she dismissed what I said forcing me to call again and insist I talk to Dr C but was given Dr H the jerk who told me it must be my teeth and then yelled at me to forget the muscle biopsy! I was stunned.

Now that my immune sys is down cause vit D is down the symptoms have started to return in more of my face for the myositis. I want to see Dr C but when I call to ask for this I am told by scheduling meekly 'you can ask and maybe you will." Or when I asked my neuro she said all I needed to do was ask. She doesnt help me at all in that clinic.

I think Dr C is a good neuro optho but now that this other neuros stuff is out there with this last bad appointment I am not sure about that either. Will she stick with the medicine without being swayed? My internist jumped ship which I can only think is from pressure by saying in her notes it is somatic or neuromuscular. Somatic has not been said in my record since 06 and the virologist who was clueless about why I needed to drink so much water put this out there. The water thing was about Sjogrens. I had alot of docs treat me crazy on the water issue but I fought and went to doctor after doctor till one immediately said thats sicca. I had put a name to it before any doc did.

Sorry this got so long. The point is that I am really scared. The university is the only place close to get treated my eye issues cleared up since they are this complicated. I cant afford to travel nor does my duaghter have the ability to go thru a travle situation either to say Kansas City the next closest place with a really good MG center. I want to drive again and this myositis if not gotten under control could it seems affect my eyes longer.

Annie59