I was wondering if anyone knows if MG is genetic? Is it possible to be passed along to future generations??

The reason I ask is because my Grandmother passed away a couple of years ago from many things including complications of MG.

Recently I've noticed my dad is having some of the same symptoms as my Grandmother.... My dad said he is seeing signs of MG in me.

Any help that anyone can offer will be greatly appreciated!!

Abbie

Abbie,

I'm sorry your Grandmother passed away; even though it's been a couple years I'm sure it's still difficult to deal with.

Yes, MG can be more of a "hereditary" disease in some families. There are also other types of myasthenia that are quite common to be passed along from generation to generation. This is the best website out there on ALL the myasthenic syndromes:

http://neuromuscular.wustl.edu/synmg.html

BTW, look at the photo they use - even on this site - of someone with ptosis! Look at the man's tie. Not even from last century!!! Okay, MAYBE the 1910's. They often use these exaggerated photos in medical text books. MG ptosis can be so mild you may not even notice it.

Did your Grandmother have Acetylcholine Receptor Antibodies? Can you find out? Myasthenia Gravis is an autoimmune disease and antibodies attack the neuromuscular junction. Some people have the AChR antibodies, some the MuSK antibodies (new one) and some can be seronegative, meaning they haven't found any antibodies but the disease has been (relatively) confirmed.

The myasthenic syndromes are genetic, meaning there since birth and caused by a genetic defect. They are not autoimmune. Some people with them have absolutely no acetylcholine, some less and some too much of it. When any family shows a tendency towards having MG or MG symptoms, genetic blood tests can be done to determine if it is really MG or one of the myasthenic syndromes. This is especially important in people with seronegative "MG" because they could've been misdiagnosed.

Also, as we age, we lose acetylcholine. So muscles can get weaker due to that as people age. Aging often makes MG worse in people.

If you suspect you or your Dad have MG, get to a neurologist right away. You can also go to a neuro-ophthalmologist to determine if you have fatigable ptosis (toe-sis), otherwise known as a droopy eyelid. My eyebrows also droop, as does my entire face!!! MG can affect all skeletal muscles and there are a lot of them!

Is your Dad on any drugs? There are some that can make MG worse, some that can actually bring on MG symptoms or the disease itself. You guys should not have Ketek/Telithromycin (antibiotic) because it can kill a person with MG! There are other drugs too that can make MG worse. Let me know if you need a list.

Don't mess with MG. If you guys have it, or one of the CMS (congenital myasthenic syndromes), then you need help right away. There are only two places in the United States who test for CMS: University of California at Davis and the Mayo Clinic in Rochester, MN. They are the only ones who have the labs/tests who do the genetic blood testing and specialized muscle biopsies.

What might help is to take photos of your face early in the day and then at the end of the day. Compare them. Do you see your eyelids drooping? Do you have double vision. You may not notice double vision until a doctor points it out or how to look for it! If either of you have shortness of breath, you need help right away. Breathing problems can get worse with MG and they can make it impossible for you to breathe well or at all (not saying that to scare you, just to make you aware!).

If you say what city you live in, someone here might be able to direct you to an MG expert. You really want an experts eyes on your situation! And a neurologist to be a decent human being as well! And if you really are "lost," then you probably need a neurologist anyway.

I hope this helps. Living with MG is manageable but not without proper diagnosis and care. I hope you guys can get this figured out soon.

Annie

In my family my auntie had a muscle weakness that was probably MG. It was never diagnosed but Neuros have said since that she looks as though she matches MG. I have just found out her first cousin had an identical muscle disease and also her niece( my second cousin).

The Dr my second cousin is seeing is calling it a rare form of muscular dystrophy that does not have a genetic test yet.

Now I am really spooked. Is it a rare MD or MG for everyone and all the others were misdiagnosed ?

My auntie and her cousin has passed away but could this be possible - in one family ? Do all Neuros know about CMS ? My symptoms started about when I was 10 and I think I had some remissions through my life but now have symptoms again.

And my second cousin is in a wheelchair now. Could that still be MG ?

Xanadu, MG is often mistaken for CMS and can be vice versa. Without the proper tests, you can't know for sure. And there are some congenital myasthenic syndromes where people have too much acetylcholine and Mestinon will make them worse.

Since you have so much going on in your family, it's worth asking for a referral. It stinks that there are only two places who can do the testing.

No, not all neuros know about CMS or even LEMS (lambert-eaton myasthenic syndrome).

CMS runs in families. Some of them are autosomal dominant, meaning you only need one gene (from one parent) to have it. Others are autosomal recessive, meaning you need one gene from each parent to have it.

So, yeah, if there is a dominant CMS running in your family, then it needs to be thoroughly investigated so none of you have to suffer needlessly.

This stuff does get missed.

If you need to know specific doctor names who deal with this, let me know.

Annie

Xanadu, I found this info for you because I noticed in another post that you are from Australia. If you ever want to find a doctor for a specific disease, you enter the disease in PubMed along with the city or country.

http://cmsluke.blogspot.com/

http://mdaustralia.org.au/about-md/fact-sheets/

http://mdaustralia.org.au/about-md/s...in-your-state/

http://mdaustralia.org.au/contact-us/

http://cat.inist.fr/?aModele=afficheN&cpsidt=1277590

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1288244/

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=3

And this one is from South Wales, Prince of Wales Hospital.
Maybe call this hospital and ask if they do the specialized testing.

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=2

Hey Xanadu,

I can kinda relate to your predicament...My mom told me recently that she had an aunt who always had a slack jaw...She told me that after this aunt would talk for a bit, her jaw would hang open and she'd have to hold it shut with her hand...My mom also told me that her sister's voice goes completely nasal when she gets upset...My mom has 8-brothers and sisters and they're all sorta scattered about...They don't talk to eachother much, so it's hard to get info...I happen to have autoimmune MG, but this new info. from my mom has got me totally confused...I don't know what to make of it! My mom also has a droopy eyelid that she's had since I was born, and a lazy eye that she's had since she was little...She also has difficulty lifting her feet up when she walks, and sorta walks like a soldier...All these things have existed since I've been little, and my mom just sorta learned to live with it and never went to the doctor about it (other than the lazy eye which she had surgery for, but has returned). Argh! I seriously don't know what to think about any of this!

From what you've written, it definately sounds like CMS...I hope that you get the info. from Annie re. the doctors 'cause you don't deserve to suffer like this!

EDIT: I just wanted to add that there's an excellent book that my sister had ordered online for me called, "You, me and MG." It talks a lot about CMS and includes patient stories, so it's an excellent resource...Check it out!

Nicky

Thanks Annie and Nicky !!! I am so inspired ! I see my Neuro tomorrow actually for my check up... and now I have a path and can make some sense from this - its is all starting to come together ...

I don't care if the Neuro calls me delusional. I know I am on the path to an answer !

I will try to read the links and get the names. My eyes are so tired right now so hope this message makes sense...

Thankyou!!!

Well I guess it was good that I read the replies before saying what I had to say about this.. I was told by "THE" MG specialist that MG was not genetic. That it did not "run" in families. I was actullay very surprised by the replies here but than again I was DXed 19 years ago and I am sure much has been learned since then. I will be checking out the link in Annies reply. Good post as I myself learned something from it.

Well, there is more than one issue here. MG is not typically genetic though there have been families where it is dominant. So even though it's "atypical" it still does happen.

CMS does run in families because it has a genetic cause.

Since the genes that cause diseases are often passed down from one generation to the next, even if someone doesn't ever get the disease, they could have the gene.

It's all very complicated and no one should say a definitive statement like your neuro said, Joanmarie, because nothing in science is black and white.