Ocular myasthenia they think... (repost on advice from general board)
 

Hi all.

My name is Sabrina and my husband Brian has 'acute onset diplopia and left eye ptosis' (aka sudden double vision and a drooping left eyelid). After 6 weeks of tests (bloodwork, CT scan, MRI, more bloodwork) and ultimately a visit to a neurologist in Sydney last week, it looks like he's going to be diagnosed with ocular myasthenia.

We expect to get a prescription for Mestinon on Monday as well as a referral for a thymus scan and a glucose intolerance test. There was talk of a nerve test but that's been set aside at present because the neurologist doesn't think it is needed to make the diagnosis.

[Update, Brian has now tried Mestinon with no effects. No good effects, no side effects. He has tried 30mg, 60mg, and 120mg. Not even any nausea; he might as well be eating tic-tacs.]

I'm trying to learn all I can about myasthenia, but would be grateful for any advice for newbies especially at this juncture before we fall in with doctors' opinions. My mother was an advocate of treating doctors as part of your consulting team; I'd like to think that the myasthenia community has a lot of knowledge that is also of value to us as we try to move forward.

At this point, my husband just wants to be able to see again (can only see out of bottom of eyes or with each eye separately). But I am also concerned about following the right course of treatment to give him every opportunity for remission, and to deter (if possible) progression to generalized myasthenia.

Any advice about Mestinon, alternative diagnoses, holistic health approaches, best sources of information, or anything else we should know would be gratefully received.

Thank you,

Sabrina

I started out with double vision. My MG blood work was Negative. I went to a neuro-opto and he dx'd Mg and put me on a large dose of prednisone and it cleared my double vision in a few months. My blood work came out positive 6 months later. My MG has progressed to generalized. Mestinon never helped my vision problems.
I suggest he see a neuro-opt.
Mike

Welcome Sabrina, I have general myasthenia, not ocular, so not much help. You may find helpful information at myasthenia.org. Type 'ocular' in the search box. Also, mda.org. Type 'myasthenia' in the search box. You can also search on the myasthenia forum here.
Jim

As Mike pointed out, Mestinon often has little or no effect on ocular myasthenia. Most often it is steroids that do have an effect.

I presume that the doctors have ruled out other possibilities such as palsies.

Have you tried patching one eye to see how much rest can help that eye. At least then with just one eye in use at a time the double vision should be gone.

If it is myasthenia, then as far as I know there is no way to deter progression. With some people it happens, with others it doesn't.