(The title was supposed to be Need Advise, not New Advice, sorry )

Hello Everyone,

I was DX with MG in 2008. It mainly effects my bulbar muscles and my symptoms are mild. I have recently been told that my eye lids are weak and I have felt a general weakness and fatigue in my body. I also started having vision problems two weeks ago. It's not quite double, however I do notie if I look in a direction to the side (almost strain) it takes a while for my eyes to center focus. In my center field of vision I am noticing mild distortion and waviness. Things look wavy not blurred. I have seen an Optician, Neuro-Opthamologist, ENT who did a VENG which checks balance and looks for Nystagmus and Saccades, and my Neuro. When I told my doctor about this he was concerned because my eyes are being told they are healthy with the exception to some notice weakness at certain angles and my eyelids. This distortion/waviness which I can only describe as words seem to gently wavy in all direction when I am looking at them. It's not as bad if I close one eye, but it's still there. I am FREAKED OUT. So my doctor wanted to run tests to check for a bunch of things such as stroke, MS, and vasiospasms. I just feel like my eye sight has gotten worse and gets worse the more panicked I get.

In the past 2 1/2 weeks I saw all of these doctors and had a Brain MRI with and without contract, mri with and without contrast of the eyes, MRA, and C Spine MRI. I also had a CT scan before those because I went to the hospital. I can't put a name to it but the closest thing I can say is that its like a very mild form of Oscillopsia except for I am not impacted diferent when I am walking or sitting or laying. I don't know the name except for "distortion." I also had an EEG which tested the nerve transmission and brain for my eyes to brain, ears to brain, and limbs to brain, all came back normal with a small exception in the right leg which my Neuro said was minor and I have never had a problem there except for breaking a toe.

I have 0 optic neuritis and my Neuro said everything came back normal. I am seeing a Retinal Specialist Monday just to double check. I do not have any lesions on the brain which can be evidence for MS. All other testing such as visual field testing and the visual evoked potentials were normal. He seems to think this is my MG and he said he has heard of this before with people in MG because the muscles are continuing to weaken or move and cause a wavy effect (but I'm not so sure). I have yet to find anyone with this symptom on the internet. This is not blurring as much as it is distortion. I was almost in tears becaues I was sure this was MS and he said he doesn't think it is and that we can rerun the tests in 6 months becaue it can take a while for MS to show up. He also said we could do a lumbar puncture and if that came back negative for MS that he is 99.9% positive this isn't MS and just my MG acting up.

This is why I am reaching out. I am just wondering if anyone has had similar issues. It does get worse as the day progresses and gets worse when I am stressed. Xanax does reduce the symptoms (probably because stress is reduced) but I still have this symptom in the mornings now, just not as intense. I do have the General form of Myasthenia but just started noticing problems with my eyes the past couple of weeks. I noticed back in January I was having problem with my eyes focusing quickly and that prompted for my first eye exam in like 8 years. At that time, I did not have this symptom but advised I should get glasses and they said I have an astigmatism.

I'm scared and just looking for advice. I am getting the lumbar puncture next Friday, but so far, the only thing that has come back Positive is MG which we know I have issues with. I just don't think these symptoms are typical because I can't find it online. The stress is making everything worse. I have never taken any meds for my MG because everything has been mild. I'm tempted to start on some meds soon or ask for the Tensilon test to see if the eye symptom stops. I don't know. What do you guys think?