Quote:
Originally Posted by AnnieB3
Hi. I'm glad the surgery went well and that you don't have a malignant tumor.
Are you on Mestinon only or some other medications for MG? Any other meds for anything else?
What you describe, your eyes not "working together," is what happens in MG. There are a lot of muscles around the eyes and if they get weak to varying degrees, the muscles don't focus both eyes in the same way. That results in blurry or double vision. Is it better when you close one eye?
Do you feel dizzy or have any other symptoms?
It's possible that your MG is better. Did you have Acetylcholine antibodies? Have they rechecked them since surgery?
You have to let the experts figure this out. I hope that you will also see your neuro and talk about all this. They can't really tell how someone with MG is doing over the phone! 
It would help to write down your symptoms and when they happen too. If you do get weaker, maybe you can take a smaller dose of Mestinon and see what happens. That way, you can figure out if it's the disease or the drug that is making your MG worse.
I hope you can figure all this out. It would be great if the thymectomy helped make you better. Still don't overdo things because the disease may get better but it doesn't disappear.
Annie |
I am only taking the generic Mestinon.
Definitely was better when I close one eye, as it was before the surgery. Now that I'm off the medicine, it doesn't seem as necessary.
I have been slightly dizzy, but don't seem to be now that I'm off the medicine.
Acetylcholine antibodies? I'm not sure about this question. Would this have been something given at the time of surgery or in the immediate aftercare? I'm not aware of anything other than the Mestinon.
I'm a little frustrated right now with the whole neuro and the office procedures. They are a big group and I don't have much contact with my actual neuro, except through his nurse and her giving him messages when I call. She calls me back with instructions. I do have an appointment at the end of the month, before I go back to work, but it's with his FNP - My neuro isn't available until the middle of January. Although I was told I could ask for him to stop in during my appointment for a moment or two.
I am keeping a medical journal. I decided to go for with not taking the medicine, and then back to say, 1/2 tab if I see any other symptoms. I pretty much only noticed the double vision before surgery, and was only made aware that I had some muscle weakness after the neuro testing that was done for my diagnosis. So, I'm not real tuned to those or other symptoms, but might be now without the medication. I plan on telling the neuro ophthalmologist tomorrow about all this and I'm sure it will get back to my neuro and I can talk with the FNP at my next appointment. Will certain start taking the medication again if I have any kind of trouble. Have to say it's such a joy to be able to type this and see!
I think I have been under the impression that if your symptoms were mostly with your eyes, that having the Thymus removed might just fix you up for good. I'm obviously leaning towards that! Thanks for your support and thoughtful comments and suggestions. I really appreciate it! Will keep you posted. As i think we all know, it's a long journey
