NeuroTalk Support Groups - I Want to Give Up

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- - I Want to Give Up (https://www.neurotalk.org/myasthenia-gravis/191249-i-want-to-give-up.html)

Quote:

Originally Posted by strizzlow20 (Post 999502)

Spoke to the neuro today. He is sending to the Mayo Clinic. I will be making arrangements to see them see after I fork out 500 for a past bill that I owe. I am also going to Shands Medical Center at the University of Florida next Friday for them to look into balance and vision issues. These are my last steps. 2nd sets of MRI came back fine with no lesions or tumors. Doctor still thinks the eye issues are from MG but some of the sensory issues such as tingling aren't consistent with MG. I have no idea of what kinds of test I will go through, I just hope they're thorough. He is also going to have them look into LYME since my other eye issues started when I was 17 in New England. I have floaters, palinopsia, and some phenomenon where you see bright sparks darting in your vision when you look at something like the sky. There's a name for it I just can't remember. Anyways, I don't know. I think after this there's not much to do but to try to plug away. Doctor was ok with me with tapering off of Prednisone since it may skew some of the tests they will do. It's really hard and depressing sometimes. :(

Are you in Florida? I live in Orlando and see a dr in St Pete that is well versed in MG. ALAN Weiss
Cellcept has helped my double vision.... So sorry for your frustration

Hi, and I am glad you are going to Mayo clinic. I was DX'd not with MG but with auto immune problems. They set up a trial for me to go to, at Columbia Missouri medical facility. Mayo was very very good to me, and got to the bottom of my problems when all other doctors were stumped. Testing lasted days. I saw a doctor who was actually named Dr. Mayo! This was back in 1989. I sure wish you all the best, and that they finally DX you. ginnie:hug:

So I found some information below. If what I am having are too subtle to detect on an exam, I guess it's not impossible for me to have the vision issues that I am having. I read about pseudo internuclear ophthalmoplegia myasthenia gravis which can mimic true INO.

What is Internuclear Ophthalmolplegia?

Internuclear ophthalmoplegia (INO) is the classic visual problem of the eye movement system in MS and is seen in 22 percent of individuals with the disease. INO can involve abnormal movements of one or both eyes. INO is the result of an inflammatory demyelinating lesion in the pathway joining the eye muscles that allows us to move both eyes simultaneously when looking to the side. This pathway is called the medial longitudinal fasciculus (MLF), and is located in the brainstem. With an MS lesion affecting the MLF on the right side of the brainstem, the right eye can not look towards the nose (to the left), but the left eye can move out towards the left. The right eye will, in a sense, try to ‘call the other eye back’ towards the right side if gaze to the left is maintained. This will result in involuntary, rapid, rhythmic horizontal movement of the left eyeball (nystagmus). It is this combination of failure of one eye to look towards the nose, and nystagmus of the other eye that identifies INO. INO results in double vision (diplopia), since the eyes are not able to focus on the same target. When looking to the one side, if either eye is covered, the double vision will go away. Another abnormality that may be seen is double vision on upward gaze, since the eye on the side of the affected MLF will often be able to look “higher” than the other eye. Some INOs can be quite subtle, and difficult to identify, while others are obvious. In addition to double vision, individuals can experience visual confusion, transient visual sensations of objects swaying back and forth (oscillopsia), reading fatigue, and loss of depth perception (stereopsis). Intravenous steroid therapy can be administered for acute INO.