a few questions if you dont mind
 

Hi everyone, Im allen.
I was diagnosed with Myasthenia back in March, after having double vision problems. First was told it was a 4th nerve degenerated something palsey, but it go worse.
anyway, I was put on Mestinon, and was kiling myself with way too much dosing in the beginning.
Doc told me immediately to cut down and I have, and the stomach problems and double vision are in check. Im happy about that.

I notice when I walk around crowded places, for some reason, I get a bit overwhelmed, almost dizzy, like my eyes wont function properly, and I have to take it real slow. I perspire so heavily now in only moderate heat.
Are these side effects any one else is noticing?

Hi Allen!
 

Hi Allen! I think there's not much people online now, else your posts would have been answered long ago! But I'm glad I'm the first! Lol.. Welcome to the forum!! This place is great! Ask as many questions as you want, am sure they're all happy to help!

Am sorry to hear of your diagnosis, but its really great that the Mestinon is helping to keep your symptoms in check. When I was on Mestinon, I had the side effects you were mentioningl. I perspired heavily even in air conditioned rooms. Lol. I got giddy when in crowded places, sometimes even when I tried to get up I would feel that. The docs did tell me that it may be due to the excessive perspiration, anda sked me to take more water. I'm not sure if it helped, as I was taken off Mestinon a few days later due to my experiencing all of the side effects, and it didn't really help my weakness.

:hug:

Hi Allen,

welcome to the forum.
I notice being in crowds sends me into spins,
firstly because of the noise, and secondly because I'm concentrating so hard not to bump into people or trip on things my eyes start to close, they once would have tried to go into double vision mode. They also get the shakes, move very quickly from side to side, this is very disconcerting if I'm walking around.

I do perspire lots even in winter, but use to do this pre mg, so its a hard one. I do have more night sweats which can also be from pred, as well as I guess from mestinon.
hope this helps a little
Kate

Hi Allen,

Welcome to the group! Since I've had MG, going on 11 years, I can't take the heat at all and perspire a lot. A temp of 80 now feels like 100 to me. Mestinon often makes it worse, even a low dose. My vision is often effected when I'm in crowds, especially when I'm in a store. For me the lighting has a lot to do with it. They can be fine and as soon as I walk in I start getting double vision. Do you have only ocular MG? Take care.;)

Hugs,
Pat

Welcome to the best MG support site on the internet. I have had MG over 18 years now and I can say when I was on Mestinon I felt the same way as you. Have you had a thymectomy yet? I had one and did not have a thynoma but I did go into remission for many years. I am now out of remission but I don't take any meds as the side effects cause my MG to worsen. As for crowds or shopping or anything I have to focus on I get double vision and dizzy sadly I guess thats just something we have to learn to live with when we have MG. I find that tilting my head helps with the vision. As for the sweating, that is indeed the mestinon. I hope you feel better soon and know that you have many who understand you here. Feel free to ask anything.

Hi Allan
 

I have been taking mestinon a while now and my eyes still can't cope if there is a lot of visual stimuli.

Its almost as if they can't move quick enough to focus. It can be very disorientating and I have had several falls because of it.

Welcome to the site and ask as many questions as you like. I think you'll find we are a pretty friendly bunch and if we don't know something we will try and find out!

Nice to meet you

Love
Rach:winky:

Hi, Allen. That's great that you and your doctor were able to adjust your dose and feel better.

When eyes don't focus properly because of weak muscles, you can feel dizzy. One eye is going one way while the other is going somewhere else! And doing things like looking around, reading, driving, etc. will make the eye muscles weaker and that feeling worse.

Having said that though, if you have dizziness that won't go away on a regular basis, see your doctor. Don't assume new symptoms are from MG.

Heat makes MG worse. However, MG does not cause an increase in sweating. If that is happening, please have your heart checked out. Bring this up to your primary doctor. Sweating is NOT a sign of MG. Yes, Mestinon can cause sweating but it would do it on a consistent basis, not only when you did an activity.

I hope that helps. It's hard to figure things out when you have a new disease. Keep asking questions. These guys are great.

Annie

thankyou everyone, your answers have calmed some fears of mine.
Its not that Im happy everyone seems to suffer similar effects, but at least I know when its something I cant explain to my family, people with this understand.
Pat-yes, as of now, my neurologist says I only suffer from Ocular MG.
Being Im 55y/o, he feels I might be lucky?(as opposed to people who suffer more symptoms)and only have to deal with ocular symptoms.
I was so incapacitated by the drug at first, the stomach problems kept me home, and in work, locked in the bathroom.I was driving on a highway away from my home, already wearing prisms in my glasses, and my vision just went haywire on a saturday night. Even with the glasses, I couldnt focus, double vision and bluriness was incredible.
I sat in my car and cried, I figured for sure I was going blind and there was nothing I could do about it. I couldnt park my SUV that night, I left it on the grass at the hotel I was at, and tried to just go to bed.
In the morning, the eyes worked much better with the prism glasses, so I went home immediately, and started seeing a few more doctors until I was sent to the right one.

I appreciate the quick responses.

My wife is always concerned since my hobby is woodworking, and I work with alot of power tools, but with my glasses on, I dont seem to have a vision problem, as long as I look down at my work or machine.
My eyes tire by the end of the day, so I take it all in stride.

Its just frustrating to have to explain to my children and family members.

I hope everyone here feels good and has a good summer, enjoy the nice weather.
Again, thankyou all for open and honest answers.

You wrote "I couldnt focus, double vision and bluriness was incredible.
I sat in my car and cried" Well I think we ALL can say we have done that. As for your woodworking, you know when you can do it and when you can't, as I said earlier tilting of the head helps me. :D

Hi allen
I refuse to give up what I love, so I do them. Projects take me much longer now, way longer, I take a lot of breaks & start up again, but when I do finish it is the best feeling, & thats the reward ! I bet you do beautiful wood work ! Any pics?
Mary