NeuroTalk Support Groups - Time to introduce my story

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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Time to introduce my story (https://www.neurotalk.org/myasthenia-gravis/86390-time-introduce-story.html)

Thanks so much Mary, for sharing your story in such detail! It helps a lot and also encourages me. :) Do hope you're feeling better, and yes! Will be thinking of all of you. This site is great, so are all of you!

Quote:

Originally Posted by maryec (Post 508040)

Yeah I did, right after I was diagnosed, It helped my breathing, I am thankful for that, I couldn't walk across the room, without being out of breath. I have a severe overlap that is flaring right now, & it always gets my MG going also. Just need a high dose of drugs, to put it in it's place ! Which I am getting this week.

What is a thymus? I am new tonight to forum

My mother has MG and I am learning what I can about it. What is the thymus and how does it play into the disease? Thank you.

Quote:

Originally Posted by erinhermes (Post 507811)

Hey hon! I am so sorry you have had to go through all of this - just ain't right......

Some people have "moderate" MG, while others (myself included) suffer from it daily - just not fair!:(

It does and WILL get better! You have to believe that......after all, without hope, what would we have?

You are so brave! I remember writing my story for the MG support group here in SA and I had to take a xanax first - too many horrible memories. I have a tendency to "block out" stuff like that in order to stay sane.....:D

You are amazing - simply amazing. Try and take it ex and let others do stuff for you.......dust bunnies be damned! LOL:D

Once you are on your road to recovery this will fade from memory.........hopefully that will be soon!

I don't remember - did you have a thymectomy?

Big hugs!
Erin:D

The thymus gland is needed as a child,& is located over the heart, as you mature your body doesn't need it anymore. But grows & spreads. People with MG are predisposed to cancer in this gland, & they don't really understand medically, but when removed, MG symptoms improve at different levels, for different people. So it is used for a treatment for MG, & gets rid of cancer, or takes that possiblity away ! There is more detail about this on the web, this is just my understanding, when I had it done.
Also welcome, I hope I have helped you, there is a lot of people on this forum that have had this done.
Mary

Hi Chews - I'm so proud of you for educating yourself on your mothers disease! I don't know if you've read the post on family denial, but it makes life much harder on us so you are to be commended!

The thymus gland "programs" our immune system when we are younger and by about age 30 it should have finished it's job and kind of shriveled up and gone away. To be honest, they don't really know exactly what it does in MG, but have found that removal can put one into remission, or at least lessen the severity of MG, thereby reducing the volume of drugs required to keep MG under control.

I hope you visit us often, and encourage your mother to join in as well.
She's very lucky to have someone in her family take the initiative to learn all they can - most of my family did that, and their understanding has helped me tremendously!

I would encourage you to visit the "sticky notes" located at the top of the posts for links to help you even more. MGFA.org is a wonderful resource for getting information! AND they have printable information for care providers, medical staff (many hospital personnel are almost clueless, so this is very important) family and friends, and of course for the patient themselves.

Thank you for taking an interest. Hope to hear from you and your mother again soon!

Quote:

Originally Posted by chewslife (Post 509909)

My mother has MG and I am learning what I can about it. What is the thymus and how does it play into the disease? Thank you.

Wow Mary, you sure have been through so much and have such a great attitude. You will be such an inspiration to many others. I wish you all the best.
Pat

Thank you Pat, it has taken awhile to find new things I can do for accomplishment. I used to get it through my work. It is a learning expierence, I try to have 1 prodject a day I want to finish, sometimes I get 3 or 4 done ! My mind is always busy, I have big plans ! LOL.....
Mary