NeuroTalk Support Groups - generalized MG

Hello and a big WELCOME to the best site on the web for MG!:hug: You are going to LOVE it here! I can guarantee you that! THe people are amazingly supportive and very bright. Plus we can all empathize in ways that other people are simply not able to do....

MG is called the "snowflake" disease b/c EVERYONE reacts differently to it. Granted, we all suffer from some of the symptoms, but we are all so different.

I am 35 yrs old and have been dx'ed for almost 2 yrs now. It took me almost losing my life b/4 I was dx'ed. I was so desperate that I would have done/said anything to feel better, so when I was in the ICU I chose pred. I have suffered from EVERY side effect - except psychotic behavior. I have gained @ least 70 lbs. I think I have glaucoma. It is the pits, but I am able to swallow, walk, talk, BREATHE! Would I go the same route? Amazingly, yes! I was just too sick to make it without the pred.:eek:

You may want to consult another neuro and see what he/she has to say about your illness. IT is a tricky little devil. :(

I've known people that have been dx'ed with generalized MG, had their thymus removed and have been in remission ever since. You may be in that category. Don't ever give up hope! Hope is what keeps all of us alive and happy!:D:hug:

From the little I've learned about MG it is not a progressive illness.

Hang in there and I hope you feel better really soon!

Big hugs!
Erin:hug:

Quote:

Originally Posted by draggin' (Post 611459)

Hey all, I dont really have the hang of this site yet. How to post. reply etc. Hope this reaches you.....I was hoping some of you with generalized MG will respond. As I said in my first post, my exacerbations are getting worse and more frequent. I finally gave in to a cane, handicap parking tag for car and I used the electronic carts at walmart during my last exacerbation (things I said I would never do) last summer...but this time, I can barely get around with the cane and I dont have the energy to even think about going anywhere.....first of all theres the whole getting ready part and then Id have to take dramamine because weak neck muscles cause me to get car sick. So I guess my big outing will be the Dr on the 29 th. Now, heres my question (sorry it took so long) ....He told me last time that Im taking a pretty large dose of mestinon every 4 hrs 60 mgs and doubleing every other dose to 120...then 180 mg Timespan at night. This time, Im taking alot less but still alot. 60 and 90 during the day and no Timespan. Less makes it worse and more makes it worse. I know he is going to want me to go on 10 days of steroids but Im afraid this will just be the start of it. Ive always refused it and got by because Im afraid of the side effects. Ive had MG for 20 yrs now....Its too late for thymectomy and he said the blood cleansing is temporary. What should I do? I keep hearing the very first neurologist I saw who told me "you have MG and you have to adjust your lifestyle. Sometimes you wont be able to walk, talk, see etc.".....Those of you with Generalized, should I just accept that Im getting older and my body cant fight it as well? Is there a wheel chair in my future? Because, dont get me wrong, I know there are ALOT of worse things to have and I dont want to feel sorry for myself, but Id just like to hear the truth about my future....dont worry...I can take it....Im a possitive person and will deal with what God has in store....just would like to know what that is. Thanks Draggin'