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Old 12-14-2009, 04:20 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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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

Last edited by AnnieB3; 12-14-2009 at 05:33 PM.
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"Thanks for this!" says:
Abbie (12-16-2009)