A word Irish?

[kathylee]

Irish,
While Ive prepared for seeing the muscle neuro tuesday I was knocked off balance by a remark in a MG message room I tried. The first response was from a fella that flat out said Id never get back to my former level of health no matter what I did. I admit after spending these months here with you and these great folks I found this scary and deflating at a time I need to be at my best..hopeful. Now I know there are no guarantees and I get that any improvement could take weeks to months to see. But to think that after finally recieving such a delayed diagnosis that I will get no better than this.....well Irish I just need some of your wonderful encouraging words. I regret that I have these bouts of insecurity but then I think that are what firends are for.
Thanks
Kathylee

[Pooh]

Hi Kathylee,
I know you have addressed this to Irish, but I just had to throw my 2 cents in to.  Sounds like that party could use some positive attitude adjusting.  Since he/she thinks there will never be any improvement, I'm sure for them there won't be. 

You only get out of life, what you put into it.  If you keep a positive attitude and tell yourself you will improve, you will.  You can't help but get better. 

It saddens me when people say things like that.  A young man at our local high school lost the use of his legs in an auto accident.  He was told he would never walk again.  He didn't even bat an eye, he just looked straight in the doctor's eye and said "Yes! I will".  It took him 2 yrs. of very hard determined work, but he walked (with crutches) up on the stage to receive his dipolma at graduation.  He doesn't need the crutches anymore.

Don't ever give up on yourself and accept the worst.  Look to the future and say "Yes, I will". 

Hugs, Pooh

[Patze]

Hi Kathylee,

I also thought that the guy ought not be joining in on a chat until he could get his own attitude adjusted.  Dang, some folks!!

And Pooh is right, a positive attitude is everything, hey, some days it's the only thing that's pulled me out of a lot of lousy days, and keeps me bouncing around like Tigger too (sorry Pooh, I couldn't resist).  

Don't give up, keep your spirit strong, and by the way, you've got to feel sorry for the guy, I mean you know he can't be very happy.


Patze

[kathylee]

No it is fine that you respond here...I didnt craft the subject to be both open and to Irish but wanted to. Irish has myasthenia gravis and she has offered much incouragement and factual MG stuff. But I know all of you are great supporters. I AM barely walking at this point and it seems my body is adjusting to the mestinon because I am having breathing problems again on a daily basis. My goal is to have 'strength' in my step again and to sing. I havent been able to sing for.....over 4 years and now I finally know it is the MG.
A realization that has hit home with my fathers passing IS how important being psotive is...to live in it and around it my father did not have that. His parents lived to be very old..his mom 103 yet his heatlth started to fail many years ago. My dad actually started to improve for a period when he was alone at a new facility. I am not sure what drives my mom to be this constant stream of negativity but she is.
Anyway I want to live in spirit and light and hope and love and to share that with my children and grandbabies and others I encounter in life.
Hugs
Kathylee

[irish]

kathylee, First of all, I have to remark that I would imagine that the remark was made by someone on the MGA website. I visit there frequently and I have found them to have sort of a negative attitude at times.

You do need to know that no one knows how any of us with MG will react to the treatment. The important thing is to get the treatment. Some people have better response to meds and IVIG than others but that should not cause any of us to have a negative attitude about it.

There are so many meds out there that can be used that to give up before one starts is really a downer. That fellow that said that sure doesn't sound like he is any fun.

Just go and get diagnosed and treated and don't expect a miracle overnight. Any time we can see some improvement in our condition, no matter how minute, we all need to be very thankful. I think that the thing you need to realize about MG is that it is a fickle disease. I was feeling so much better there for a couple of weeks and now I am tired and run down from having company and my weakness has increased. I love having the company but any darn stress can drag us down. We are like babies, we need to have an orderly life that is as stress free as possible. The heat even makes MG patients worse.

Just hang in there. Also, ask about Imuran for the treatment of the MG. It is said to work very well but does take time to kick in. Many times people with MG really have dramatic decrease in weakness after 1 or 2 sessions. Let us know how the doc appt goes. Irish