Mestinon, Frustration, Denial, etc.

HiHo · 10-04-2008, 10:26 PM

Hey there! I know I haven't replied at ya yet, but wanted to get my 2 cents in! My son, who is 8, takes high doses of Mestinon and takes Timespan at nite. When he initially started this Mestinon, they also put him on Robinul to help reduce the side effects of the Mestinon. My son, fortunately, never had the "big D' very bad and only drooled a bit, so he never had to take it. You might want to check into it. Hate to see anyone suffer needlessly! Here's to better days for you, my son, and the rest of the MG population.
Heidi

Quote:

Originally Posted by erinhermes

You know, I never had double vison until right before I became really sick! Again, EVERYONE has different problems - min started with a nasal sounding voice and extreme fatigue, then after I became really sick with some sort of "bug", the double vision started - I had no idea my eyes were actually rolling around in my head @ the time - people thought I was on something, when in reality my eyes were just too weak to stay focused for more than a few seconds....not fun! Again, some people just have the eye, swallowing problems, and others (like me) get the full on disease, so hopefully you will only have eye problems

, not fun, but definitely better than breathing, swallowing problems, etc........

MG patients usually have problems with the anasthesia - that's why it's so important to make sure that your docs know you have it - that way they can keep you intubated until you can fully breathe on your own. I awoke from my surgery to have that horrible tub e down my throat and fought tooth and nail to breathe on my own - they kept telling me not to fight it, but it's just so darn scary having that thing stuck down your throat. MY brilliant neuro also made sure I had 5 days of IV IG to insure I would be strong enough to handle the surgery (my thymctomy), and it went off without a hitch - painful, but (hopefully) successful........

. I do know that my anitbodies were down before I left the hospital, so that's a step in the right direction..........

I've read that a serius illness can make make MG worse, or even cause a crisis - so maybe that's what caused your problems to come to a head - but unfortunately, since there is no known "cause" or "cure", we may never know........What options has your doc discussed with you? Are they talking surgery? Cellcept?

Let me know how you are doing when you get some time

Take care!
Erin

neutro · 10-05-2008, 07:57 AM

KTunes, the circumstances which are reported to trigger MG are (amonst others…):
-cancer
-surgery
-intense effort or stress
-pregnancy and delivery
so your surgery in June might be the initation point…
Also, once you have MG, anesthesia might deteriorate the patient condition, that is why it is so important to inform any medical personal in advance so that they could select the proper products compatible with MG.
Maurice.

erinhermes · 10-05-2008, 09:55 PM

You know, I really believe whatever I "caught" in Belize caused my crisis..........Before that (a few YEARS before that to be exact), I was feeling reallyt tired, but whatever I caught in Belize caused hundreds of little spots on my lungs and headaches that would keep me crying for hours on end, coupled with a 103 fever that would not go away.......The docs still have no idea what I had, which makes my really really nervous - if you dont know what you have or what caused it, how can you prevent it? Anyway, how are you doing today? Are you feeling better? Let me know when you get some time!
Erin

Scots Kat · 10-06-2008, 12:23 PM

Hi all,
I went under general anaesthetic to have my wisdom teeth removed and the anaesthetic caused a crisis. I couldn't swallow, breathe, or anything. It was so scary. And although i had a few small symptoms previous to that surgery my symptoms became much worse after that. I have had a blood test as well since and I am pseudocholinesterease deficient, which apparently means I am intolerant to certain types of anaesthetic. The last time I was put under I needed twice the dosage of whatever reverses the effects to wake me.

I feel for anyone who is struggling with mestinon becuase it was such a lifeline for me in the early days! I've luckily never had any issues with it. The steriods are another matter. I've started to reduce my dose - now down to 50 mg every second day and I really thought my swelling had reduced. Then I went away this weekend and someone was taking photos. After the event they put the photos on a power point and showed them on a huge screen. Every photo of my face was like a slap- I still don't look like me and it was heartwrenching to look at this terrible image. Got me down so much! I am still feeling good though - so I need to be grateful for that!

Hope everyone is well! I'm thinking of you all.
~Kathy

erinhermes · 10-06-2008, 04:00 PM

I thought my swelling had gone down a bunch too, but people are truly shocked when they see me now! They'll say things like "girl, you've put on weight" or other idiotic things - I respond to their stupidscomments by replying that it is the steroids and then freezing them out with a cold stare.........it works every time! I have always had a long thin face and now its like a balloon! My beautiful sis has a huge head and mine in twice as big as hers, but @ least we can breathe, eat, swallow, etc, ........

It is depressing but @ least we are here for each other!

Hang in there! We'll be back to normal sooner than we think - my neuro has me on 15 mg of steroids every day, so hopefully I'll look normal soon!!!!

Take care!
Erin

MissyGirl · 10-06-2008, 06:25 PM

Sorry to burst your bubbles, but truly, you have to be just about totally "off" the steroids before the swelling starts to go away very noticeably. You will make it, tho!

Scots Kat · 10-07-2008, 11:07 AM

Quote:

Originally Posted by MissyGirl

Sorry to burst your bubbles, but truly, you have to be just about totally "off" the steroids before the swelling starts to go away very noticeably. You will make it, tho!

BOOOOOO! Ah well! At least I can get into the bath on my own now - and do up my own bra! I'll just have to look on the bright side and be happy being a "Bobble-head Doll" version of me!

erinhermes · 10-07-2008, 01:56 PM

I loved that "bobble head" comment! That was great!!!!! We are very lucky that we can now breathe, eat, etc,............so I guess being 20 lbs heavier really isnt that bad! My hubby always tells me how "beautiful" I am - he is so full of it! On the plus side, I now have really cute new clothes and can work 6 days a week! I did leave early today, cuz' I was really tired, but we are in the process of moving and you all know how much work that is......

Gotta go for now!
Take care!
Erin

KTunes · 10-09-2008, 01:34 AM

Yep, no doubt about it, steroids suck. But so does not breathing.... so y'all are right on target by focusing on that instead of the puffiness. I hope you can all be steroid free one day!!

Goodnight.

K

erinhermes · 10-09-2008, 03:41 PM

You are so upbeat and cheerful! It is wonderful! I have my days where all I want to do is whine/vent/scream, but for the most part, I try and "roll with it" and realize that while what we have is horrible, it could be a lot worse (MS, cancer, etc) and so I try and view every day as a gift from God. That way I appreciate all the little things and try and not sweat the small stuff

- plus stress is not good for us - at all!

We (my hubby and I) are in the process of moving our office, so I may be offline for a couple of days. I just don't know how tired I'll be at the end of the day.........On the positive side, our new office is super close to our home, so that is a step in the right direction......

Have you started on any new meds yet? How are you feeling?

Hang in there and let me know how you are when you get some time!

Erin

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