My mum has Myasthenia Gravis

[Debrinha GT]

Hello everybody, my mum has suffered from Myasthenia Gravis since the age of sixteen and is now getting worse. For those of you who have never heard of this disease, it's a neuromuscular autoimmune disease that causes a weakening of the muscles, and in which the body creates antibodies against its own nicotinic acetylcholine receptors in the neuromuscular functions. This disorder affects 50 to 125 people per million population. She has tried some types of treatment but without success and is afraid of dying from slow,painful death eventually since the illness now seems to be progressing quickly. Anybody looking at her would say there's nothing wrong , but the fact is that she has somehow learned how to live with the illness even though on some days she hardly feels like getting out of bed. It all started while she was pregnant with my sister . Unlike in most cases, there was no warning at all! She just collapsed on to the ground and from that moment on, she knew there was something wrong. She then went to see several doctors who just kept saying it could be emotional, lack of vitamine, you name it. It was only a few years ago, after some more complex tests that she was finally diagnosed with MG. In 1990 she nearly died when they removed the tubes out after she'd had breast surgey, but the doctors at the time thought it was associated with smoking since she has always been a heavy smoker.
If any of you know or has heard about someone with the same disease, I'd appreciate it if you could reply to this thread. I'd also like to hear opinions and suggestions from anyone who is familiar with it or has for some reason, done some research on it before. Thank you.

Débora

 

[Yaps]

I sent you

I sent you

a private message... let me know if you got it ok?

 

[Debrinha GT]

Thanks a lot!

Thanks a lot!

Hi Mag, I got your post and loved the site. I saw that it looks similar to this forum and I wonder how you join. Where they say USER NAME and PASSWORD, am I meant to make one up or what? Can you help me find my way around it? Thanks for guiding me.

Débora.

 

[Yaps]

yes

yes

I thought perhaps you could go there and this will also help your Mom see how a support group can help. I will find the register page for you. Yaps

 

[Yaps]

here is the link

here is the link

http://www.healthboards.com/boards/forumdisplay.php?f=130
just go to register, choose a name and a password, you have to give your email address, name ..so forth then they will email you a password.. save it if you lose it you will not be able to post,only veiw.. love the yapper

 

[Heather Fisher]

I'm so sorry to hear about your mom. I have worked with patients with MG before in a hospital setting as it was related to speech and swallowing. Just wanted to say I'm thinking of you. Let me know if I can help. I'm not sure that I can tell you anything you don't already know.

Heather

 

[Guest]

Hi Debora,

My father-in-law has MG so I sort of know about the disease. He also has several other problems that were brought on by the MG or that are aggrevated by it. I'm so sorry that your mom has it as it can be a very painful and distressing disease.
Perhaps we culd get your mother and my father-in-law connected through email?? He was talking about trying to find an online support group for MG recently and I don't know if he was successful in finding one or not He was impressed by the support I have received through my heart support boards and was seeking that same kind of support from others with MG.

Maybe we can hook them up??

Julia

 

[Debrinha GT]

Thank you very much!

Thank you very much!

HEATHER I'm very happy you've answered and yes, since you're familiar with the illness and have worked with people who have had it, I think you might be able to help me as questions come up.You see, my mum is now at the stage in which her organs are being affected and breathing is getting kind of difficult. She says everything hurts and she feels very weak. It seems the disease has been getting worse over the years. Anyway, what I would like you to tell me for the time being is what should we expect from it from now on and what are the odds for this illness as far as you know? My step father died from ALS and she fears her death could turn out to be like his, very slow and painful for the brain doesn't get affected it seems. Hope you're able to answer these. Thank you.


JULIA I'm sorry to hear about your father in law, has he had MG for a long time? I'm afraid it won't be possible for him and my mum to comunicate for two reasons: first of all, she only speaks Portuguese, and the second is that she knows nothing about computers at all, has never dealt with one. I've seen there are some support groups on the internet and above Heather's post you can see Yaps' where she has refered me to one which I'm trying to join. There's another one I found by chance and they have a chat room. Put in a seach for MG and you'll get there eventually. Can you tell me how your father in law's doing at the moment and if he's on any medication for it? I'd be very happy if the two of us could keep in touch in order to exchange information as their illness progresses and if he too wants to talk to me, he can feel free to write or find me on yahoo messenger. What's his name, by the way? My mum's Hilda. Thank you too for replying.

Débora