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Posted 12/3/2013 2:02 AM (GMT 0)
I am sorry for posting this here and taking up space, but I have found so much help and support here, that I am just trying to find the same love and support for my best friend.

She suffers from Myanthesia Gravis, and I have directed her to this website, but her disease is not listed, and I didn't know if the moderators could possibly suggest what disease/condition board may help her.
idea
I feel so bad for her, as her life expectancy is only about a year left. smhair
any suggestions would be so welcome, she is my best friend, and I really need to help her. cry
Thanks for your help and understanding....
Posted 12/3/2013 3:12 AM (GMT 0)
So sorry for your friend. That has to be incredibly difficult. I will keep her in my prayers.

If you do a search for 'Myasthensia Gravis* forum,' there are several forums/support groups listed.

Best wishes and it's obvious you are a wonderful friend to her. Bless you!

(*Is this what you mean?)
Posted 12/3/2013 3:15 AM (GMT 0)
I'm so sorry about your friend but she is welcome to post on the fibro forum. We could help with pacing yourself and also trying to control stress. These are two things that help with this illness. We also can help with maintaining a positive attitude. Yes, this could help her, too. Could help extend her life. Positive thinking helps with any illness. Also, we are good listeners.

As far as her life expectancy, only God knows the answer to that. Doctors have been wrong many times. To put a "date" as to how long a person will live is a terrible thing to do. It takes away hope, causes depression, and the doctor could be wrong. Living one day at a time it's so important. Enjoying each day that we have.

Sherrine
Posted 12/3/2013 3:38 AM (GMT 0)
Sherrine,
Well, they haven't said, "You'll be dead n a year", BUT right now this disease is shutting down her throat muscles. So she could be int he middle of eating, and her throat doesn't receive the message to swallow, so she chokes.
And when she is tired, her speech slurs, her vision goes, and her legs have been giving out on her.
The way I have been explaining this disease to people is this:
Your muscles have receptors on them (garages), and you brain sends out messages (cars). When your brain sends out the "car", it goes in the "garage" and that muscle responds.
In this disease, when the brain sends out the car, and it goes to the garage, the door is shut. So no message gets thru.
The doc told her, stress progresses the disease, and the next thing to go will be her lungs. When that happens, she is done.
And it sucks the big one :( She is a loving person, and I am glad her children are mostly grown (only one left at home, and she is 18. BUT she does have 4 older ones, and a grandbaby)...I am sad for her, but am trying my best to help her.
Not easy as I just spent another month in the hospital.
Prayers anyway...lol, thanks for helping guys...I will help her find some support groups :)
Thanks!!!! Just getting your support on this is taking some stress off me too! and after this past month, I need that. Thanks a million times over.
Posted 12/3/2013 3:10 PM (GMT 0)
At one time, I had drug induced Myanthesia Gravis brought on by medication I was taking at the time. The doctor and I didn't know what was causing it because my lab work was normal. I had to do my own research for side effects and stopped taking the meds which is now off the market. After a couple of days, I returned to my normal self.

What I am trying to say, in a round about way is, it was the worst I have ever felt in my life! I could not even walk to the bathroom without my muscles giving out on me! I am so sorry your friend is having to go through this. These forums would be a great support system for her.
Posted 12/4/2013 6:51 AM (GMT 0)
I'm sorry, Mrsbugzy. That's got to be so tough for you - my dad had ALS, and I gather MG is similar in many ways. I was with him through the whole ordeal.

Your spending time with her is the best thing you can do for your friend, but I'm sure you already know that...so many people don't want to (and flat-out won't) be around someone that ill....it really makes me sad.

Hugs, Debbie
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