Hi, I'm new to the forum
 

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!

Hi Pat

Welcome to the group :)

Brian

Thanks Brian, it's good to be here!

Welcome Pat, this is a great group of people. I too wish there was something like this when I first was told about my MG {back in 91} Need to vent or ask questions, this is the place.

Thank you Pat!
 

Thank you Joanmarie. This is such a great place and wonderful people like yourself. Pat

I am so glad you are doing well with the mestinon treatment, & the plasma worked well for you ! Welcome !
Mary

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

Thanks Mary...it will be nice getting to know one another. I've been trying to figure out how to use the icons. haha I'll figure it out eventually. Thanks again. Pat

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