Posted on 09/06/2021 7:19:36 AM PDT by harpu
Sorry, for the personal nature of the Thread BUT...I recently got diagnosed with Myasthenia Gravis (MG) and had never heard of it.
I'm posting the Thread to ask if anyone here on FreeRepublic is familiar with MG, either them self directly, or has a friend or loved one who has the disease.
MG, apparently, has been around forever and is 'kind of' a cousin of MS (Multiple Sclerosis). So far, it's been pretty debilitating with blurred vision, loss of strength, balance problems, and extraordinary fatigue from not a lot of activity and heat. From what I've learned, it's not a curable disease but treatable to minimize impact on my lifestyle.
Again, sorry for the personal Thread but I'm trying to learn how to live with this sh!t - now that I've got it.
I know nothing about MG, but prayers up for you.
My dad has a mild case and has had it for about 5 years. He’s over 80 and I think they gave him medicine for it that keeps it under control. It’s not noticeable.
Just curious... Did you, or do you smoke?
My mom has it, but it’s mild and completely controlled with medication.
One well-known figure who suffered from MG was Aristotle Onassis.
Praying for you to recover, which is certainly possible now, given the better understanding. Outlook is good for most people.
I hope you get better, but just curious what your diet and exercise situation like?
Never smoked
An acetylcholine receptor (AChR) antibody test is used to help diagnose myasthenia gravis (MG) and to distinguish it from other conditions that may cause similar symptoms, such as chronic muscle fatigue and weakness.
Three types of AChR antibodies may be tested:
AChR binding antibodies.
AChR blocking antibodies.
AChR modulating antibodies.
Acetylcholine receptor (AChR) antibodies are autoantibodies produced by the immune system that mistakenly target proteins called acetylcholine receptors that are located on muscles that you can consciously or voluntarily control (known as skeletal muscle fibers). This test detects and measures AChR antibodies in the blood.
Muscle movement starts when an impulse is sent down a nerve to the nerve ending, where it stimulates the release of acetylcholine, a chemical substance (neurotransmitter) that transmits messages between specific types of cells.
Acetylcholine travels across the very small gap between the nerve ending and a muscle fiber (this gap is called the “neuromuscular junction”). When acetylcholine reaches the muscle fiber, it binds to one of many acetylcholine receptors or “docking stations” and activates it, initiating muscle contraction.
AChR antibodies impede communication between nerves and skeletal muscles, inhibit muscle contraction, and cause rapid muscle fatigue by preventing activation of the acetylcholine receptors. They do this in three major ways:
Binding antibodies attach to the receptors on nerve cells and may initiate an inflammatory reaction that destroys the receptors.
Blocking antibodies may sit on the receptors, preventing acetylcholine from binding.
Modulating antibodies may cross-link the receptors, causing them to be taken up into the muscle cell and removed from the neuromuscular junction.
The end result of this interference is the development of myasthenia gravis (MG), a chronic autoimmune disorder associated with the presence of these antibodies and with their effects on muscle control.
AChR antibodies may be detected in different ways to determine which mechanism may be the problem, and the antibodies may be referred to as “binding,” “blocking,” or “modulating.” However, the technique that measures “binding” is the most commonly performed and, generally speaking, it is rare for the other two tests to be positive without the “binding” test being positive as well. These other two tests may be useful when a healthcare practitioner strongly suspects myasthenia gravis and the “binding” test is negative.
Regular treadmill and water rower use but not excessive. Nothing since the MG kicked in - on Doc's advice.
I have an aunt that was diagnosed with it about 30 years ago. She treats it with meds, is now 91 and still enjoys gardening during the spring and summer.
Had it for appx 35 years, but think it started as far back as high school ( I am 73). Mestinon, Plasmapheresis , IVIG can keep it generally under control. Impact on breathing is a significant issue. I have stopped breathing at night more than once. Weakness is a constant along with muscle pain, and flair-ups can put you down for a while. But you can make it. Check out the MG group on Facebook. Good luck
This is the kind of research that I’ve been doing (and finding) also. I’m looking to network-up with others who are going through the same sh!t.
It seems all too common for people to post their personal maladies on a political discussion website. Well let me tell you about my hemorrhoids. I might sound unsympathetic but isn’t there somewhere more appropriate to tell people about your arthritis? How about Facebook. That is what Facebook is for. They will kick you off for a political opinion but not for having an illness. We are here for political opinions. You should join a support group if you need someone to talk to about your parkinsons.
My mother in law had it with extreme weakness of the muscles in her neck. She would hold her hand under her chin to hold up her head when speaking with someone.
She did not have the drooping eyelids, but did have difficulty swallowing.
If AChR antibody test results are normal but a healthcare practitioner strongly suspects myasthenia gravis, an anti-MuSK (muscle-specific tyrosine kinase) antibody test may also be ordered.
People with MG often have an enlarged thymus gland and may have thymomas (typically benign tumors of the thymus). Located under the breastbone, the thymus is an active part of the immune system during childhood but normally becomes less active during the teen years. If a thymoma is detected, such as during a chest computed tomography (CT) scan done for a different reason, then an AChR antibody test may sometimes be used to determine whether the person has developed these antibodies.
It’s hard to imagine a doctor recommended no exercise.
I would try going to 100% wheat free for a month.
I’m a bit of wheat and gluten free advocte these days. Because it changed my life. I could barely walk, my joints hurt so bad, I had a big fat stomach that blew up like a balloon, And acid indigestion so bad it would make me unable to sleep.
Everything went away when I stopped eating wheat.
But try it for a month and see if it works for you. But you have to be religious about it... One misstep resets the clock and you need to start over.
Also take a ton of vitamin D for a week
Good luck! It has been around for awhile.
Robert Heinlein wrote a short SF story about MG in 1942:
https://en.wikipedia.org/wiki/Waldo_(short_story)
“essence of the story is the journey of a mechanical genius from his self-imposed exile from the rest of humanity to a more normal life, conquering the disease myasthenia gravis as well as his own contempt for humans in general. The key to this is that magic is loose in the world, but in a logical and scientific way.”
https://www.earthclinic.com/cures/myasthenia-gravis.html
there might be some good info and guidance here for you. Earth Clinic focuses on the natural CURES of disease. Typically, the mainstream medicine (very similar to mainstream media) only focuses on covering up symptoms
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