hello
 

Hi, I was diagnosed with MG in Sept 06. Have been on Mestinon, trying to build up to a suitable dose, but seem to be very sensitive to it. Am having a thymectomy in a week, and starting to get very apprehensive about it! Trying to find some type of support that is out there, my neuro's favorite phrase is "this is a very individual disease" so I kind of feel like I'm going along in the dark here. Am a graduate student in Chemistry in Texas, and just trying to trudge through at the moment, having a lot of low energy days. Anyways, glad to have found a forum!

Kate

hi kate. welcome to neurotalk.

i'm in texas too. dfw area.

i don't know much about mg, but nt is a very supportive and friendly.

Welcome, Kate! Glad you found us. I was diagnosed with MG back in the 1970's. I never had a thymectomy, the neuro felt my MG was so mild, and of course, we had no insurance. MG is indeed a very individual disease, very definitely NOT one size fits all.
I only take Mestinon. You'll have to arrive at your optimum dosage on a trial and error basis. When I first started on Mestinon, my neuro told me to begin with 1/4 tablet, 4 times a day, and add 1/4 tablet each day until I got overdose symptoms, and then drop back down 1/4 tablet. I finally ended up with 1/2 to 3/4, depending on how tired I was that day, but I overdosed so easily, and my MG was so mild, that I basically went without Mestinon for years, just controlling my fatigue by resting and pacing myself.
In recent years I've had to start the Mestinon again, and now take 1 tablet every 3 or 4 hours, plus 1/2 Timespan at night.
By the way, Timespan is not supposed to be broken, though the occasional neuro will recommend 1/2, and I break mine in half with my doctor's blessing. (GP, though, not neuro). So I'm NOT suggesting you try breaking a Timespan, just mentioning I do it.
How much Mestinon do you take? Have they started you on any other medications? It is possible you will go into remission after the thymectomy, but the experiences of others have been that improvement comes slowly, over a period of months. You will probably not experience any drastic, sudden improvement, and may not improve at all, unfortunately.
Keep us updated on your thymectomy! Hope it goes well for you, and you have a speedy recovery.
Hugs,

My MG is mild to moderate, which is why we are opting for the thymectomy, hoping I will go into remission or at least have some improvement, since I'm only 26. It was a difficult diagnosis, since the only positive test that came back was one of the antibodies.

I am on 75mg of mestinon right now, and can only tolerate 15mg at a time, otherwise it knocks me out and i'm a major zombie for about 4 hours. we don't think the is the right dose yet, since i still have droopy eye some days. No other meds yet, I did'nt think there were many other options besides prednisone for 'flare ups'. I have been reading more about IgG, I didn't realize that was used so much on a regular basis.

fatigue is my biggest enemy, and i'm trying to find a pattern where i can work a fair amount (graduate school is unforgiving unfortunately).

Thanks for the thoughts, it really feels like I'm in this alone (except for my wonderful husband), as it can be so difficult to explain to others, and then they still don't always get it.

Kate

I can understand exactly what you mean about others not getting it. One of my biggest peeves is being asked in a casual way how I'm feeling. If I respond I'm tired, the usually comment is: "I know just what you mean!" Oh, really? You try walking around feeling like you are wading through thigh deep mud, or raising your arms when you feel like like someone has hung 50 pound weights on each arm, or even holding your head up when you feel like you need to support it with your hand because otherwise it just might fall off and roll around the floor for all the support your neck muscles can give it! :D
Back to the question of Mestinon. 15mg doesn't sound like much at all. If you take more than that, do you get any other symptoms than just feeling like a major zombie? Usual symptoms of overdose are things like muscle twitches, excess salivation, tummy cramps and maybe diarrhea. Fatigue CAN be a sign of overdose, but in my experience, you have to be REALLY overdosed to experience fatigue. I wonder if something else may be causing the zombie effect, and you are really underdosed rather than overdosing?
If I overdose, the first thing I experience is twitchiness around the eyes and excess salivation, maybe excessive sweating. If I've really overdosed, I probably then would get the cramping and diarrhea. I carry atropine for those rare times I overdose.
By overdose, I mean taking more than my optimum dose of Mestinon. You want to take enough to relieve fatigue, but not so much that you then begin to get the symptoms of overdose. More later, I'm running late.
Hugs,

Hi Kate,
Just wanted to say welcome... I had a thymectomy in March - the build-up to the surgery was scary and as it turns out they prepared me for things that never happened. My surgery went well and I did not have to be on a respirator afterward. I was in intensive care for 2 days, a regular unit for aday and home on day 4. I was sore - and I didn't do much for a while. Tkae care of yourself - rest beforehand so you go in strong. I had IVIg beforehand and it helped alot. Until quite recently I was getting IVIg every two weeks - it is an amazing thing - you almost feel normal afterwards.

You are young and they have had great outcomes with young people with thymectomies. It may take a while for you to feel results. I am still waiting for that magical remission but I do feel better than I did before the surgery.

The Mestinon takes a while to dose correctly...you'll figure it out.
Good luck and keep in touch!
Gabe

Thanks for the great thoughts. I saw my neuro for one last visit before surgery yesterday, and it helped a lot, not nearly so apprehensive now. Have new mestinon dose number 15 I think, hehe.

Lois, I asked about timespan since you had mentioned it, but it only comes in 120 or 180mg, and even a half of that is waaaay too much for me, but he had some other suggestions.

After surgery I guess we'll try some new things, either prednisone, IVIG or Imuran or CellCept since my symptoms are intensifying a bit.

thanks, a good days to all!