MG Concerns
 

I am a 71 year old who was diagnosed with MG in September. I'm in seemingly excellent health so the neurologist wanted me to have the thymus removed which I did in December. When I went for my appointment with the neurologist he increased my mestinon dosage from 3 to 4 tablets every four hours. I was disappointed as I thought it might be decreased instead of increasing it. I haven't had any weakening since the surgery and am confused as to why he increased the medication. Any ideas from any one out there? Thank you

Frank,

First may I say Welcome to the site, I hate that you have MG but you found the place for help.

I think the Dr. increased the mestinon because surgery is very hard on our bodies and the mestinon should help. If you notice that you are becoming weaker with the extra mestinon than let your Dr know right away, as to much mestinon is as bad as not taking any at all.

You will learn to adjust your mestinon as you need it. For example, on my good days I may only take it once or twice but other days I take it every 3 hours, it depends on your strength.

Please feel free to post your story and never think that what you may feel is not important as we ALL suffer with MG at different stages. Some of us have it severe and others just have double vision but we all know how each other feels.

Hi Franck, welcome to this site!
As I've got about your age, I'm curious to know what symptoms you had before the surgery and what decided your neuro to have your thymus removed. Above 65, I think it's quite unusual unless there is sign of thymoma.
Also, what was the technique used, robotic, transternal or else?
Don't worry about Mestinon, if you don't need that much, you'll soon lower it, with your neuro's approuval.
By the way, what Mestinon tablets do you take, 60 mg or else?
Maurice.

Thanks for the reply. I hope I'm at the correct place to respond (I'm trying to learn this). The neuro wanted to have the thymus removed due to the fact I am seemingly in excellent health and the quick onset of mg. I only began having symptoms in July of 2009 and thanks to the quick thinking of the neuro he ordered extensive blood work and determined it was mg. I went to a surgeon in Dallas and he performed a partial transternal and as thought by the neuro no sign of a tumor for which I'm very thankful. From what I've been told the results of the surgery won't be known for several months. The mestinon tablets I'm taking are 60 mg each. Thankfully I've not been bothered with much weakness, only problem I'm experiencing is blurred/double vision although I haven't been all that active since surgery was performed on December 16th. Thanks

Hey Frank,

Welcome to the group! It's good to hear you are recovering nicely from your thymectomy and there wasn't a thymoma. Are you having any symptoms since your neuro increased the mestinon that you didn't have before? You could call and ask your neuro if he/she would decrease it and see how you respond to a lower dose. I agree with Joanmarie that he may have raised it because of your surgery, but you do need to let the neuro know of any changes in symptoms or new ones. They could be cause by the increase. Please keep us posted and again, welcome!;)

Hugs,
Pat