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Old 06-24-2012, 10:15 AM #1
Dee-Dee Dee-Dee is offline
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Help New member - Dx'd with Myasthenia Gravis

Hello,

I'm Dee. I'm 48 & newly dx'd with myasthenia gravis. I am being scheduled for a plasma exchange & thymectomy.

As anyone could guess, scared out of my wits.

I live alone with my daughter, aged 21 & our cat.

I am at my boyfriend's half the time. So I am not alone much, unless my daughter is in school or at work.

I am unable to work. Also have FM/CFS.

Very frustrated with my life, but still manage to have a few good laughs every day.

Looking for a little extra support here.

Thanks!!
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Old 06-24-2012, 11:00 AM #2
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Hi, welcome to the community! Have you found the MG forum yet? If not, here is the link, and also the one for FM/CFS:

http://neurotalk.psychcentral.com/forum77.html

http://neurotalk.psychcentral.com/forum12.html

But feel free to jump in anywhere! Support is what we're all about here,
and we pretty much all are, or have been, scared out of our wits too!
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"Thanks for this!" says:
MelodyL (06-24-2012)
Old 06-24-2012, 06:42 PM #3
MaryTSteckart MaryTSteckart is offline
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Quote:
Originally Posted by Dee-Dee View Post
Hello,

I'm Dee. I'm 48 & newly dx'd with myasthenia gravis. I am being scheduled for a plasma exchange & thymectomy.

As anyone could guess, scared out of my wits.

I live alone with my daughter, aged 21 & our cat.

I am at my boyfriend's half the time. So I am not alone much, unless my daughter is in school or at work.

I am unable to work. Also have FM/CFS.

Very frustrated with my life, but still manage to have a few good laughs every day.

Looking for a little extra support here.

Thanks!!
Hi Dee Dee and all,
I am a new member and am in the process of having myasthenia gravis ruled out. What symptoms did you have ? Maybe we can support each other through this scary stuff. Both my blood tests were neagative, but I do have ptosis ( droopy eyes) and am exhausted quite easily. I will pray for you.
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Old 06-24-2012, 09:34 PM #4
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Quote:
Originally Posted by MaryTSteckart View Post


Hi Dee Dee and all,
I am a new member and am in the process of having myasthenia gravis ruled out. What symptoms did you have ? Maybe we can support each other through this scary stuff. Both my blood tests were neagative, but I do have ptosis ( droopy eyes) and am exhausted quite easily. I will pray for you.
Hello.

My name is Melody and I just want to welcome you to Neurotalk. I see that you have been given the correct forum. And indeed, you can help each other.

We have many forums here and we even laugh at ourselves sometimes. Here's hoping you two get some answers.

You are in my thoughts tonight.

Take care

Melody
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Old 06-25-2012, 11:12 AM #5
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Laugh just connecting

Hello Dee my name is Lenora,
I have just joined NeuroTalk today. Because I saw your post about your new diagnoses. I will be 51 on this Friday. I was diagnosed with MG 2 years ago. I was found to have a thymoma requiring a thymonectomy. Before the surgery I received plasma exchange. I immediately felt better. Much so I when receiving the news about my tumor turned to surgeon and said Ok. So I will go home now and come back to the hospital and have thymonectomy at that time. And this was Monday morning. The thoracic surgeon sternly said No! you are scheduled for surgery on Wednesday. I have had plasma exchange one other time for a relax in symptoms following a medication change. Just dropped in to say hello and let you know there are others that understand.
Quote:
Originally Posted by Dee-Dee View Post
Hello,

I'm Dee. I'm 48 & newly dx'd with myasthenia gravis. I am being scheduled for a plasma exchange & thymectomy.

As anyone could guess, scared out of my wits.

I live alone with my daughter, aged 21 & our cat.

I am at my boyfriend's half the time. So I am not alone much, unless my daughter is in school or at work.

I am unable to work. Also have FM/CFS.

Very frustrated with my life, but still manage to have a few good laughs every day.

Looking for a little extra support here.

Thanks!!
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Old 06-26-2012, 01:30 AM #6
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Wink Greeting!!

Dee Dee, Mary, & Lenora,

Hello and welcome each of you to NeuroTalk. Happy to see you have come to be with us. Here are a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene
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Old 06-28-2012, 01:58 AM #7
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Hi Dee,

I'm Dena and I also am new here but I have been dealing with MG for 27 years. I was 12 when I first hear about it. I have been in & out of remission a few times but this is the worst it has ever been. I can't work but I have a wonderful husband who is learning about this disease. I have 2 children and 4 step sons and they have all been very helpful and wonderful with my disability. If you have any questions feel free to drop me a line. I check on here as much as I can but I will get back to you ASAP.

God Bless,
Dena
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Old 06-30-2012, 10:33 PM #8
Dee-Dee Dee-Dee is offline
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Thank-you for directing me to the right forums.

I have not been on much the last several days as I was away at my boyfriends & had a very poor signal there!

I am home now & going to spend the next several days researching as much as I can.

Thanks again!

Dee


Quote:
Originally Posted by Blessings2You View Post
Hi, welcome to the community! Have you found the MG forum yet? If not, here is the link, and also the one for FM/CFS:

But feel free to jump in anywhere! Support is what we're all about here,
and we pretty much all are, or have been, scared out of our wits too!
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