Ocular myasthenia they think...
 

Hi all.

My name is Sabrina and my husband 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.

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

Hi Sabrina,
Welcome to the NeuroTalk Support Groups.

There is a forum here for
Myasthenia Gravis

You may want to repost over on the MG Forum as I'm sure the members there will be able to offer you information and support. I'm very sorry that your husband is having such a difficult time and I hope that with correct treatment he'll improve greatly.

You could also use the forum search feature to find other posts using specific keywords e.g. diplopia or ptosis or mestinon

http://neurotalk.psychcentral.com/search.php

take care.

Nice to meet you!!
 

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Thank you Lara for the advice, much appreciated. I reposted as you suggested.

What a lovely greeting. Thank you for your thoughtfulness.