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Old 05-16-2009, 09:18 AM #1
Pat 110 Pat 110 is offline
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Default 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!
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Old 05-16-2009, 10:34 AM #2
Brennan068 Brennan068 is offline
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Hi Pat

Welcome to the group

Brian
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Old 05-16-2009, 10:48 AM #3
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Hi Pat

Welcome to the group

Brian
Thanks Brian, it's good to be here!
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Old 05-16-2009, 11:16 AM #4
Joanmarie63 Joanmarie63 is offline
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Cool

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.
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Old 05-16-2009, 12:35 PM #5
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Smile Thank you Pat!

Hey Pat! Welcome and THANK YOU for giving the rest of us hope! It is always so great to hear from someone who is upbeat and feeling well!

MG is such a tricky little disease, but there is always HOPE for remission and a "normal" life........

Neurotalk is an amazing site! I am so glad to have found it!I am also so glad you found US!

Take care!
ERin

Quote:
Originally Posted by Pat 110 View Post
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!
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Old 05-16-2009, 06:11 PM #6
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Originally Posted by Joanmarie63 View Post
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 Joanmarie. This is such a great place and wonderful people like yourself. Pat
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Old 05-16-2009, 06:51 PM #7
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I am so glad you are doing well with the mestinon treatment, & the plasma worked well for you ! Welcome !
Mary
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Old 05-16-2009, 07:00 PM #8
Pat 110 Pat 110 is offline
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Quote:
Originally Posted by erinhermes View Post
Hey Pat! Welcome and THANK YOU for giving the rest of us hope! It is always so great to hear from someone who is upbeat and feeling well!

MG is such a tricky little disease, but there is always HOPE for remission and a "normal" life........

Neurotalk is an amazing site! I am so glad to have found it!I am also so glad you found US!

Take care!
ERin

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
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Old 05-16-2009, 07:08 PM #9
Pat 110 Pat 110 is offline
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Originally Posted by maryec View Post
I am so glad you are doing well with the mestinon treatment, & the plasma worked well for you ! Welcome !
Mary
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
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Old 05-16-2009, 07:09 PM #10
Pat 110 Pat 110 is offline
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Quote:
Originally Posted by erinhermes View Post
Hey Pat! Welcome and THANK YOU for giving the rest of us hope! It is always so great to hear from someone who is upbeat and feeling well!

MG is such a tricky little disease, but there is always HOPE for remission and a "normal" life........

Neurotalk is an amazing site! I am so glad to have found it!I am also so glad you found US!

Take care!
ERin

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
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