[rezmommy]

Hi Pat,
Glad that you have found this site, it is an excellent support system!
Take care ~ Melanie

[erinhermes]

No problem - that's what we are HERE for!

I truly love this site! Before I found it I was so scared all of the time - scared and angry, but this site has been amazing! The amount of support has been unbelievable!

Did you have your crisis while on meds? The thought that a crisis could hit at any time is so very scary...........ICU is a scary place. A very scary place. I try and block out as much as I can in order to stay sane!

You are so upbeat! It is fabulous! And you give us HOPE!!!!!!! Do you realize how important that is to all of us? THank you!

What meds are you on now? How are you feeling?

Thank you for being my friend!
Erin

Originally Posted by Pat 110

Hi Erin,

Thank you for such a warm welcome! I am not use to being able to reach out to anyone no less so many understanding and kind people about this disease. I started to cry when I read the replies to my post...I was so overwelmed.
There was so much I wanted to say in my post, but I didn't want to ramble on so I made it as short as I could.

You are so right about this being a 'tricky little disease'. As 'well' as I've been, I did go into a crisis and spent 5 days in ICU. It hit me with little warning and once I recovered, I went right back to feeling like I was before it happened. That will be 3 years ago this August...the heat was a big factor. I once read where a doctor wrote something to the effect...It's the constant unexpected of this disease that makes it so insidious... I truly understood what he meant after I was blind sided on that day! (:

I apologize for rambling on, but thank you so much for listening. It felt so good to actually put that in writing knowing the person reading it really understands. This is an amazing site!

I hope you are feeling well,
Pat

[Pat 110]

Originally Posted by rezmommy

Hi Pat,
Glad that you have found this site, it is an excellent support system!
Take care ~ Melanie

Hi Melanie,
Thank you, I am sooo glad I found this site! The support I've received is just incredible. Hope you are feeling well.
Pat

[redtail]

Hi Pat and welcome, as you can see we are a friendly and talkative lot(well I'm talkative as long as I'm feeling up to it, if I'm having a bad day, I sit and read, but dont sometimes have the energy to post)
take care
Kate

[Pat 110]

[QUOTE=erinhermes;511171][FONT="Book Antiqua"][SIZE="3"][COLOR="DarkGreen"]No problem - that's what we are HERE for!

I truly love this site! Before I found it I was so scared all of the time - scared and angry, but this site has been amazing! The amount of support has been unbelievable!

Did you have your crisis while on meds? The thought that a crisis could hit at any time is so very scary...........ICU is a scary place. A very scary place. I try and block out as much as I can in order to stay sane!

You are so upbeat! It is fabulous! And you give us HOPE!!!!!!! Do you realize how important that is to all of us? THank you!

What meds are you on now? How are you feeling?

Thank you for being my friend!
Erin
Hi Erin,

The only med I take for the MG is mestinon. The day of the crisis I was so sick I couldn't keep water down, no less a med. It was the third day of 90+ degree heat and no airconditioning...big mistake. I thought when it cooled down I would start feeling better. Later that evening I went to get up to get a glass of water and the feeling that came over me, I never want to experience again. That was on a Friday and the next thing I remember was waking up in the ICU on Sunday morning. It is a very scary place. When they asked me if I knew who the president of the United States was...I almost said Richard Nixon, but I caught myself in time and gave the correct answer. Then they asked me if I knew what the date was. I didn't, but right behind the doctor was a huge white board with the day & date on it, so I answered that correctly too. I could go on and on about that experience, but I'll spare you. hahaha The only way I've been able to keep my sanity with this disease is with humor...most of the time. To answer your last question...today was a very good day!

Thank you for being my friend & take care.
Pat

[cricket001]

Hi Pat.
Feel free to ramble on....I ramble too.....

I am still trying to figure out this disease...It is so hard to explain because of all the symptoms....I never can explain everything to the doc...because I feel like I will overwhelm him...I try to write everything down....he knows that I am a list maker...so he asks to see my list before I start...then we discuss them...

I have been researching the surgery...Why does it take so long for the surgery to take effect. I guess...I was hoping that I might make a remarkable recovery if I considered the surgery? Do you all think it is worth it?

Originally Posted by Pat 110

I was diagnosed with MG in 01 at the age of 49 after having two years of symptoms and no answers. I was prescribed mestinon for both ocular and general MG after my blood work came back positive. I had three plasma pheresis treatments during the week before my thymectomy in Nov. 02. It took a good three years for me to see the full benifits of the surgery. I am happy to say, I have improved greatly from those earlier days where having a good day was few and far between. I continue to take Mestinon as needed. I don't take it as often as I should because of the side effects, but I manage pretty well. Some symptoms you just learn to live with. I am just so grateful for how far I've come over the past 10 years. I didn't have a place like this to go to when I was first diagnosed, but I'm sure glad to be here today!

[Pat 110]

Originally Posted by cricket001

Hi Pat.
Feel free to ramble on....I ramble too.....

I am still trying to figure out this disease...It is so hard to explain because of all the symptoms....I never can explain everything to the doc...because I feel like I will overwhelm him...I try to write everything down....he knows that I am a list maker...so he asks to see my list before I start...then we discuss them...

I have been researching the surgery...Why does it take so long for the surgery to take effect. I guess...I was hoping that I might make a remarkable recovery if I considered the surgery? Do you all think it is worth it?

Hi Stephanie,

I've been trying to figure this disease out of 10 years...I'll let you know if I ever do...but, don't hold your breath! (: I know what you mean about overwhelming the Dr. Since my eyes aren't always at their best, I jot down notes on a post it pad and write big with a sharpie...that way I can read them when my eyes are good and not so good. If I think I have too many things, I pick out the most important ones to talk with him about. If I think we have more time...I take out some more for him.

I'm really not sure why it can take so long for the surgery to take effect. My surgeon told me it could take as long as four years. I've read about so many people who had results before they left the hospital and were 'normal' again within a year or less. Everyone is different as I'm sure you know. I took just over a year after being diagnosed before I finally decided to have the surgery. I was getting pretty bad at that point, didn't want to take roids and 50 wasn't exactly young. Ten years earlier few doctors would even perform a thymectomy on a 50 yr old. While it took 3 years after the surgery for me to see the optimal effects, I saw small improvements almost every day. I would still have some pretty bad days, but not as often. I use to have them just about every day. For me having the surgery was the best decision I could have made. I know I would not be this well had I not had it. By now, I pretty much know what I can and can't do and what things will have me being a couch potato for 2 or 3 days...we just learn as we go along and make changes as they come.

Have you and your neuro discussed surgery? How are you feeling?...if you don't mind my asking. I hope you are feeling well. Hang in there...things will get better. Having good communication with your neuro is key. Having this site is priceless! hahha

Thank you for replying to my post. I wish I could have been more helpful.

Take care,
Pat

[Pat 110]

Originally Posted by redtail

Hi Pat and welcome, as you can see we are a friendly and talkative lot(well I'm talkative as long as I'm feeling up to it, if I'm having a bad day, I sit and read, but dont sometimes have the energy to post)
take care
Kate

Hi Kate,

Thank you for taking the time to reply to my post and to welcome me. I understand completly. I hope you are feeling well.

Take care,
Pat