I have been on Mestinon for about 10 months now. My dosage is 60mg every 4 hours. My double vision has "almost" cleared up. When I look straight ahead or slightly to the right or left I see fine. If I try to look further to the left or right I get instant double vision that I can not resolve. Is this typical of MG patients? Would a higher dose of Mestinon help with this?

I am on 60 mg every 4 hours and 180 mg at night of mestinon. Like you, I have a central small area where I can see without double vision, anything outside of the small circle is double vision. I have to walk without moving or turning my head so that I do not fall into the wall. The mestinon has made my vision better, but this is as good as it has been since the MG onslaught. I am getting prisms in my glasses to help. It is manageable and I have learned to live with the quirks. If I have a bad vision day, I put ice bags on my eyes and it helps.

I am more concerned with my leg muscle fatigue, breathing and swallowing problems. They are less predictable. My eyes are much more constant and stable.

kathie

I too have the leg weakness and fatigue although they have been markedly reduced since starting Mestinon. Some days I feel like I can walk a mile, other days I have little energy or stamina at all. I'm not complaining because before I had no good days at all.

Mestinon only temporarily relieves symptoms. Have they tried any other treatments that get more to the source of the problem? Steroids, cellcept or IVIG? I am currently being weaned off steroids and I am going to try IVIG next week. I have had some improvement with pregnisone. I have more stamina but not more strength.

Have they scanned your thymus or tested your thyroid? I was found to have autoimmune Hashimotos hypothyroidism as well. A lot of people with MG have thyroid issue too.

kathie

I haven't tried any of the other drugs. I'm not too sure about taking prednisone as I am a diabetic. If my symptoms get much worse I'll consider it. The only other autoimmune disease I have that I know of is psoriasis. I've had that since I was a teenager.

No one has mentioned the thymus thing to me. I assume that's because I'm 62 years old and I've heard they don't recommend that to older folks.

My thyroid test came back abnormally high on one test but was normal on the followup so I don't know if that's part of the problem.

I have lots of muscle strength now but little stamina. I'm going to mention that to my neuro when I go back.

One other question: You mention you have swallowing problems. I was having a lot of those. I'd get strangled on my own saliva. Now, occasionally, I start to swallow and it's like I get halfway through the process and my throat just freezes up. I just can't finish the swallowing. No strangling or anything. After a few seconds it "unfreezes" and I swallow normally. Is that anything like what you have?

I would definitely see an endocrinologist about the fluctuating thyroid hormones. Often, if you get the thyroid under control, the MG settles down too. They make each other worse.

Most MGers get a scan of the thymus. There is a small possibility of a thymoma so it should be checked out.

I am a diabetic too. I am monitoring my blood sugar am I am doing surprising well on pregnisone. But there are non-steroid immunosuppresants like cellcept and imuran that a lot of MGers use successfully. Mestinon only provides temporarily relief, but no real overall improvement. You should ask your doctor about additional supportive treatments.

My swallowing is better now that I am on pregnisone. But previously, I had a lot of swallowing and choking problems. Here is a good video on the proper way to swallow with MG and some good hints about foods and diet changes to help with those issues:http://www.youtube.com/watch?v=VolCFZre4Ys. I have to think to swallow. Before MG, I could just eat and drink and do other things at the same time like read or watch TV. Now I have to concentrate on swallowing properly when I eat. It is not automatic anymore. And yes sometime it does freeze up and I start to choke on my own salivia. MG makes you concentrate on one task at a time, nothing is easy any more. I have to think to walk to make sure my feet don't start to drag and trip. I have to arrange my day and activities around My mestinon schedule. It is manageable but not easy. I am hoping for some big improvement with the IVIG. I will let you know how it goes. I eat several small meals and snacks now and make sure I eat my big meal an hour after mestinon when I am strongest. This helps me with the chewing and the swallowing.

I hope this helps. How are you doing with the heat? My MG symptoms get worse as soon as it hits 70 degrees. Next week it is suppose to get up to 80 here. I am expecting a few bad days next week. I am still working 4 days a week. I take off Wednesdays to recover. I can't make it through a 5-day work week any more.

Hope you find improvement soon. This forum is a great resource
kathie

I am dreading the summer. I am severely heat intolerant. During hot weather I stay in my bedroom with the door closed and an air conditioner running 24/7. I keep the room at 66 if possible. I start to sweat around 70 and am miserable if it gets to 80. Here in Kentucky we have some 100+ days during the late summer. It's those I'm dreading most.

Please be sure to let me know if the IVIG works for you. Right now I am fairly functional but my symptoms seem to slowly be getting worse. If this continues I'm sure I'll have to try something other than Mestinon .

Thanks for the link too!