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September 4, 2008, 4:54 pm
Flag as Inappropriate erin3386  

Hello! I was hoping to talk to someone who also has my disease. I was diagnosed March 6, and had a thymectomy April 22. I know that this is a rare and scary disease and was hoping to talk to someone who can relate to me.

MY family and friends have been WONDERFUL! I have been truly blessed, but they really don't know how I feel - how can they? I also know it must be boring for them to hear me talk about this day in/day out and would love to share stories and just gab in general ;).

erin

I dont know much about what you are going through but it is good to hear that your family and those close are supportive of you right now. Sometimes we all need a little extra support to get through certain times in our lives.

They have been amazing and for that I'm very thankful! There are times when it is kind of hard,b/c MG is an incurable disease, but there is always hope for remission! I pray for it all the time! Thanks for your reply - I really appreciate it!

Erin

Where are you from? I love your pic of the eagle......we saw lots of them in Alaska.....Have you ever been there? It is truly the most beautiful place I've ever been - bar none! Erin

What exactly is MG ? I have never heard of it. I`m glad to hear you have a good support system. That always helps a lot.

Myasthenia Gravis is where the antibodies in the body go kind of "haywire" and attack everything - think of your immune system on steroids. While this sounds good, it actually effects the muscle receptors and the body actually becomes very, very weak. A lot of us actually have to have our blood cleansed in order to get our immune systems back on track. I have been hospitalized several times b/c I could no longer swallow, eat, etc, and was actually down to 100 lbs (I'm 5'5") - it causes severe muscle weakness. It is kind of a rare disease - there are approx. 150 people in Sa who suffer from it. There is no cause and there is no cure - however the removal of the thymus (it is right above the heart and attached by 2 arteris) seems to have been effective in causing remission - at least that's what I"m praying for! It is kind of like MS or Lupus, cuz' I cannot go outside when it is hot, cannot take hot baths, etc, or I am totally wiped out.............

Wow Erin, I hope too that it works for you. My two cousins have MS. I really hate to see people suffer with things like this. It breaks my heart.

Thank you. You are really sweet. It will get better - I do know that! It sounds kind of crazy, but actually having this makes me appreciate people more and I am much more empathetic to others - you gotta appreciate all the little things and be grateful for them, ya know?