Congenital Myasthenia Gravis - New Here
 

Hello out there. I'm new here. I came across this site on google. I was born with Congenital Myasthenia Gravis. I'm 21 years old now and I'm interested in talking to other people with the same type of disease I have or similar.


Thanks

Hi and welcome.

It really is a great group of people to talk to here. We are all very friendly and supportive, look forward to seeing you around
Kate

Yes, welcome! Forgivre me I don't know cogenital mg is. Yet how bad is your mg? Is it contolled well or no?

Glad u found this site.

Hello and welcome!

You are in good company here, we are a group aging from the teens to well lets just say much older..LOL

Please feel free to ask anything and to share your story and feelings.

This is a great site for support!

Hi, I am very glad I came upon your post. I am in the same position as you are and don't have anybody like me to speak with. :( It's very hard to find others with CMG. I would like to speak with you about your symptoms. Please send me a private message if you can.

Thanks

Just a note here. New members cannot send PMs until they have been here a short time and have posted some. This is because the PM function was being abused by spammers trying to get to our members.

You'll have to talk on the boards for a short period and then the PM function will activate.

So about how long exactly do I need to wait? Or about how many posts would I need to have?

The problem with that is that I don't necessarily relate to a lot of the problems people on this board are having. So it could take a while. Plus the other person I want to speak with would have to do the same thing. Would one of us be allowed to post our email address?

Hi Lollipop

we cannot disclose that number on the boards or we will have the spammers clued in and that defeats the object. We were dealing with very ick spam being sent in multiples by spammers so had to implement this

if you just keep posting to this thread as you say it relates to your own symptoms, then you should soon have enough posts to use PMs

you are also welcome to start your own thread specific to your problems

when members choose to receive emails, they usually select that option and so the ability to email them becomes available on their profile

it is *not* a good idea to post your email on a public forum such as this as it will be on Google within a short while if you do so.

Yes, it's a very bad idea to post your email address here...I did that a while back, and am now getting add-ons from countless spammers on MSN messenger...I asked admin. here to delete the post I had used to post my email address, but it still appears on google...

Oh- Welcome, btw! :)

The two of you can maybe post some of your experiences with CMS here, then once you reach the minimum amount of posts, you can move to PMs...

Nicky

Lollipop, Do you have a CMS where you don't have enough acetylcholine, don't have any at all or have too much?

If it not enough, it is like MG but the cause and treatments are different - as I'm sure you know. Mestinon is the main drug used but there is something else called 3,4-DAP that is also used in some CMS's. Do you have an expert following your care?

Coffee, which has caffeine in it, can really be a boost for people with not enough acetylcholine. It does the same thing Mestinon does, although I think it does it in a slightly different way (my opinion). Caffeine and Mestinon are both cholinesterase inhibitors. They keep the enzyme Acetylcholinesterase from "eating up" acetylcholine so it can stay in the neuromuscular junction longer so we can use more of it.

The nightshade foods do the same thing (potato, tomato, peppers, eggplant, tobacco).

And the some of the same things, like being out in hot weather, can make the CMS's worse. Heat increases that enzyme in the body. So, if you have a fever from an infection, that can do it too. Anything that increases the body's temp. Even exercising.

I hope we can at least give you some support. CMS is like MG's cousin! Yes, the cause is genetic and not autoimmune but a lot of the symptoms are the same.

Frankenstein, If you're still out there, how are you doing?

Take care,

Annie

Hi
 

Its glad to see people who suffer from the same disorder as mine. Yes, I have been suffering from CMG since birth. Gud to see somebody around here to share my experiences and speak with. I would like to know how does CMG differ from the normal MG.

Myasthenickids.org is a great site for answers to that question and many others. It is clearly written and once you "get it" you can understand some of the rigamarole of the scientific journals. It was posted on another site and once we get to our "quota" here we can begin to communicate better.

I have MG that I suspect is CMS. I am seronegative for antibodies and my father and his sister had MG. I have been symptomatic for many years, but only recently on treatment (pyridostigmine) which has worked like magic, with some side effects. Some people with CMS do not respond to that treatment, but whether mine is due to unrecognized antibodies or is CMS, I do. I have an appointment in October at Vanderbilt in Nashville, TN where they have neuromuscular specialists, including some whose special interest is CMS. I have great hopes (once again) for a firm diagnosis, so we can proceed with trying to get me back to the place where my muscles sometimes tell me I ought to be. I exercise (gardening and Tai Chi) as much as I can and on meds, I am beginning to have some atrophy reversed, which is not helpful when you are seeing one of those neurologists that looks at the negative blood tests and the person who is stronger than he and rolls his eyes (figuratively so far). But it tells me what I have been suspecting for years, that I am neither lazy nor crazy, but my muscles are sick. Nightcrawler

Congentital Myasthenia Gravis
 

Hello just replying to your post I am 22 years old and I was diagnosed with cmg at age 3, if you would like to talk please email me. I am currently live in western Australia, and it is really hard to find someone to talk to with our contition. Look forward to you reply.
Thanks

Hello , im looking for others with this. Im looking for my children they where born with it.

:) please feel free to text back.