newly diagnosed
 

Hi group,
I just returned from a 2 day hospital stay, trying to figure out why I had sudden and progressive double vision and eye drooping. The current working diagnosis is ocular MG. The lab work is not back yet, CT and MRIs negative.

My question to the group is: from your personal experience, how soon could I expect 60 mg of mestinon, every 6 hours, to resolve my double vision. Or, how soon should I tell the neurologist, it isn't working? I have only taken 4 doses, but I still have double vision. This is very disturbing so I am wearing an eye patch. I am a working mom with 3 little kids so I really need to find out some more information.

Thanks for any advice.

I took 8 x 60 mg Mestinon for two months before my double-vision disappeared but I had generalized MG… and it disappeared almost completely about two weeks after I was given a prednisone treatment at a low dosage (10 to 20 mg/d) as I was severely down at the beginning.
Prednisone is the most effective treatment for ocular MG.
Be patient anyway with MG…
Maurice.

Wow, that is a long time. Do most people wear eye patches or get special glasses? thanks for responding, I am feeling very anxious.

My response might have been misleading: I don't think Mestinon helped me with my double-vision problem but Pred did…although Mestinon was effectve in reducing all the other MG symptoms
I stopped driving during those two months (my wife did all the driving during that period).
Maurice.

Your situation sounds so familiar! I also seemed to start out suddenly-w/double vision & eye drooping, but also w/ extreme muscle weakness. I understand (I also am a working mother of 2 young children) and I wore an eye patch for a few weeks. It took me a couple of weeks before my vision improved to the point where I did not need an eye patch. Keep taking the meds & if you feel that you are not having improvement call your neuro. They may decide to increase your mestinon. (That's what happened w/ me.) I understand how frustrating & scary this can be. I was in your shoes just a year ago. I also suggest that you look on the MGFA website & MDA. They can be good sources of info. Remember that knowledge is power! I wish you well. Good luck & peace.

Nancy Lee

Hi Pintorl,
Your story is familiar to me as well. I presented with drooping lids, double vision but also expeienced larger muscle group weakness, particularly in my legs. Unfortunately my double vision has never gone away - it is variable though and I cope okay with it. I've never worn a patch but did have a prisim fitted in my glasses for a time. No real help though. Everyone is different though (particiularly with this crazy condition it seems!) and I hope the Mestinon will work wonders for you!

All the best to you and your family!
~Kathy

Hi, I'm still trying to get diagnoised. Well let me put it this way the neuro I was seeing did feel it was Ocular MG and wanted to put me on mestinon but I refused until I get more blood work done. Blood work came back and all negatvie. My double vision has gotten worse. Now it's on my left eye. Got an MRI done 3 weeks ago and radiologist found pseudotumor in left eye so the neuro put me on predinsone, however it has done nothing. The doctors are puzzled because the symptoms with OP do not match up with mine. I have droopy eyes but double vision only on one eye, the left. I also wear a patch to drive and do things because it has gotten to the point that I can't see right. I am a mother of 2 and currently not working. Quit my job in January because of all the stress. I feel like I'm on a stand still.
I'm weaning off predinsone and they want to start me on mestinone after I get a EMG done in April. Trust me your not alone in this, I just keep praying for healing.