[Annie59]

Had the eye appointment today with the local doc eye doc who diag MG in eyes and my cataract surgeon in same office. My head is overloaded but wanted to get this up. Actually I wrote it once but must have messed up in the blur and cloudy of the eye drops they put in.

It is so complex he wont do surgery till I see the neuro optho for the myositis that is back and an eye movement specialist to try to nail down what is affecting how my eyes move which is keeping me from driving. This will be clearer in a day or 2 so I can write a little more detail. Thank Heaven my daughter was with me to remember some of what happened.

Annie59

[Annie59]

This appointment was a long long one. I am sure paying for even reacting badly to the eye drops they had to do in the process. The non surgical doc that diag the MG last May said after some initial discussion ( and viewing the notes from the univerisity) lets focus on helping symtoms not the diagnosis. "Yes doc but if you confirm the MG that would support my pulmo in getting the tensilon test done" , I wanted to say but didnt.

This doc is very smart and good so he proceeded to do a thorough testing. (boy am I brain-fogged today!) I asked him about why the prostigmine made such a huge difference and showed him what I saw before and after the injection in an illustration. He said the prism test shows the deviation but I still am not clear on how that could have affected what I saw and what they saw in me. All I knew is the prostigmine made a massive improvement in my vision but be cause of how the testing was done it didnt show for MG in their mind. The other department that did this after test even took my wheelchair away after the test. How is that for disrespect.

The surgeon ultimately said he couldn't do the cataract surgery with the myositis active around my eyes. And it is back after all these weeks without tanning so vit D is down. So where I am left is they want me to see an eye movement specialist about exactly what is going on with my eyes. AND the neuro-optho again for the myositis. They gave me an option of traveling to their main office for the movement testing. That could be good as it takes the university bias out of the mix. My daughter told them we needed to go the univeristy because it is closer. I appreciate how difficult it is for her to cart me around be we just had this last disaster BECAUSE she didnt want to go somewhere other than the univeristy. I need to talk this thru with her.

If it cant be determined that it is MG affecting left eye so strong then they said the option is eye muscle surgery. This feels crazy to me as it came on the same week I had an MG flare. Something is going astray in the testing.

Annie59

[AnnieB3]

Annie, I honestly don't know what to say. I hope you can get someone who can figure all of this out. I would think that surgery would be way down the line of options, if it isn't an urgent thing. Don't have surgery unless you know for certain what is going on and AFTER getting a 2nd or even 3rd opinion.

Annie