Old Today, 10:52 AM #1
mrratty
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Join Date: Oct 2013
Location: Leigh-on-Sea, Essex, UK
Posts: 1
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Lightbulb Ocular mg
This is my first post....In September 2013 diagnosed with ocular myasthenia. Started getting double vision in May this year. It now is there all the time; had to hold head down to the left to overcome the diplopia. Since diagnosis been on Mestinon (Pyridostigmine) tablets 3 per day that's 180mg in total. Seeing the neurologist next week and I feel that I need to double the dose, as each tablet only lasts for 3 hours. Now double vision can be overcome just by slightly dipping my eyes whilst looking ahead. Physical exertion certainly plays havoc with my eyesight.
Does anyone out there recognise the symptoms and where does it go from here.

Hello mrratty. Welcome to Neurotalk. Sorry you have MG and I'm glad mestinon is helping. My MG symptoms are mostly ocular and 180 mg/day of mestinon helps me also. Some days I don't feel I need as much. Other days, even the full dose doesn't completely eliminate symptoms. I think that's just the nature of MG. I was diagnosed last January and I'm learning to work around the ebb and flow without trying to fight it.

Your mestinon dose is very common although some people take greater or lesser amounts. Many people feel the drug wears off in about 3 hours. My neuro has condoned taking 30mg doses every two hours and I often do that to stabilize the relief. Doubling your current dose sounds like a lot. If you take too much mestinon it can actually cause muscle weakness. The 1st symptom of too much drug is muscle twitching. If you haven't read about that you can find information here: http://www.mestinon.com/

Many people use coffee or tea to work through a weak period. Apparently, caffeine has an action similar to mestinon on acetylcholine enzymes. It works for me.

It's no fun being newly diagnosed with this disease. I think stress and fear may be your worst enemy at this point. I wish you good luck finding your way with MG.

Rest and ice packs on the eyes also helps. I can vouch for the caffeine too. I prefer dark chocolate.

Mestinon only temporarily relieves symptoms and is not a cure. I have generalized MG and take 90 mg x 4 plus 180 at night. Mestinon only relieves about 25% of my symptoms on average. My eye symptoms still get worse at night. Have you tried prisms in your glasses? I got prisms in the spring and now my center vision is free from diplopia except on very bad days. I do not think that mestinon brings anyone back to their pre-MG self, but it does make life more manageable.

If your vision gets worse or you start experiencing generalized MG symptoms like extreme fatigue, muscle weakness and swallowing issues, see your neurologists. With generalized MG, they also treat with steroids and immunosuppressants. I am not sure if they use them with just ocular MG, you should ask your neuro.

Good luck,
kathie