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Forum Replies Created
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I got it. I had a slightly sore arm and felt a little “off” for a couple of days. No other side effects.
I will continue to follow the CDC’s recommendations. I also continue to mask in indoor public spaces, especially since I live in a high-number-of-cases area.
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Actually, I look forward to cutting the grass. Due to energy limitations, I spread it out over four days.
I’ve also started watching all the buds on our trees and bushes.
<div>Whan that Aprille with his shoures soote,</div>
<div>The droghte of March hath perced to the roote,</div>
<div>And bathed every veyne in swich licóur</div>
<div>Of which vertú engendred is the flour;</div>
<div>Whan Zephirus eek with his swete breeth</div>
<div>Inspired hath in every holt and heeth</div>
<div>The tendre croppes, and the yonge sonne</div>
<div>Hath in the Ram his halfe cours y-ronne,</div>
<div>And smale foweles maken melodye, …</div> -
I was diagnosed when I was 72. The ptosis and diplopia at the time were clear markers of MG, further confirmed by electromyography and antigen blood tests. But what about the episodes of fatigue (that practically force me asleep) and the difficulty swallowing? How does one know whether a symptom is that of MG, or of natural aging, or of some other ailment?
My neurologist at the time said that MG patients very often attribute other ailments to MG. But my unscientific, gut feeling is that our very complex immune systems, obviously out of kilter as evidenced by MG, may very well (and probably) affect us in “non-MG” ways.
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When I was first diagnosed, I checked all the MG websites, esp. regarding the prognosis. I read that MG stabilized after the first two years. My dysphagia seems to be slowly worsening. What has been your experience?
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I agree with David. Our quality of life has been lessened, and the change seems to be permanent. It looks like COVID-19, with its present and future variants, is here to stay.
“The secret to happiness is to face the fact that the world is horrible.” — Bertrand Russell
I’m not depressed so much by the fact of COVID-19 as by the large number of people who refuse to get vaccinated.
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Does MG affect other than just voluntary muscles, such as the heart, esophagus, or stomach?
Does MG sometimes affect the rectum, anus and anal sphincters? (They seem to be part voluntary and part automatic muscles.)
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Whether it’s from a drug, a surgery, some accidental insult to one’s body, or some other blow, my impression is that the body’s defenses (including the immune system) are tired and overwhelmed. They feel like they need to do something to counter the attack. But the “something” they do is confused and not well directed.
If that’s the case, then deep rest and removal of stress will help, and it does.
I had all of my remaining teeth extracted several years ago. I’ve wondered what my body thought of each of those nerves being torn apart. Is MG the result?
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Taking pyridostigmine late in the day led to severe cramps and fasciculations in my calf muscles. Stopping the late dosage stopped the problems.
My tolerance of and need for pyridostigmine seems to vary every day.
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Caffeine helps. Taking the equivalent of four cups of coffee mid-morning usually keeps me energetic through the afternoon.
I have not had tinnitus with my MG, TGFSF.
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Ari, when I had ocular symptoms and would go to Home Depot or Lowes, there was no where to walk — the “aisle” appeared to be as full of stuff as the shelves.
Good luck in your fight with MG!
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Hi John,
When I had diplopia, I had to use Nexcare Opticlude bandages to be able to walk around and drive. A patch did not work nearly as well. And my neurologist is guiding me on tapering down the prednisone — right now I take 10 mg or 7.5 mg on alternate days. He has mentioned that I may end up with some dosage on alternate days that is similar to the amount of cortisol that is normally produced by one’s adrenal glands.
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Dev, when my diplopia got that bad, my neurologist put me in the hospital for five consecutive days of IVIG treatments. Two days after I left the hospital, my diplopia “magically” disappeared, and it has not returned. (I’m on prednisone and azathioprine.)
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I’m puzzled by the fact that MG disease severity is not proportional to the concentration of antibodies. It seems like the antibodies are floating around in our bodies; then some trauma or other event tells them to attack the muscle cell receptors. Could it be that the disease is actually in the muscles — some chemical change that “attracts” the antibodies?
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Here’s another article on “Muscle fatigue: general understanding and treatment.”
It too makes the important distinction: “Peripheral fatigue is produced by changes at or distal to the neuromuscular junction. Central fatigue originates at the central nervous system (CNS), which decreases the neural drive to the muscle.”
We MGers are prescribed drugs to reduce peripheral fatigue, but usually not those affecting central fatigue.
Among the potential treatments, it lists caffeine. I have gradually increased my caffeine intake to four protein drinks, each with the caffeine of a cup of coffee, more or less. It works for me — I usually can be active through the afternoon.
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You may be interested in this article from the Journal of Neuromuscular Disorders. From it: “Central fatigue is believed to be important in protecting muscles from further damage by down-regulating physical activities.”
Central fatigue is different from the muscle fatigue characteristic of MG.
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Yes, my symptoms are better first thing in the morning.
Like you, my MG fatigue is sometimes overwhelming. Several times I have awoken without remembering my going to sleep.
I used to think all doctors knew everything. Now I think the treatment of an illness is very much a joint patient-doctor effort. The doctors have a lot of training, education, and experience. But any one doctor’s knowledge (and caring) is finite. Moreover, I know my symptoms better than anyone else.
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The Cleveland Clinic says “With treatment, most people with MG lead full, active lives. Symptoms tend to reach their peak in severity within one to three years of initial diagnosis. For 15% of people with MG, the disease only affects the eyes and face (ocular MG).”
I was diagnosed in June of 2019, so it’s been about 2 years and 8 months. For a long time my only symptoms have been periods of extreme fatigue and difficulty swallowing.
Do most people with MG peak and stabilize, peak and get better, or is the path of the illness just extremely variable?
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I do wish you, your husband, and Snowball well. The love you have for your dog is evident.
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Why do you think we will have an explosion of autoimmune diseases?
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I think there is some kind of magical thinking going on. “We are vulnerable and helpless against COVID-19. We will say that the reality is different, and that will change it.”
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The evidence is overwhelming that unvaccinated people are many times more likely to contract COVID-19 and even more likely to require hospitalization and to die.
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I’ve also had uncontrollable coughing and some of the other symptoms you mentioned. (I’m transitioning to a mostly liquid diet.)
I’m glad that your neurologist was willing to group digestive problems under the MG label. It’s outside the usual definition.
I think MG has many guises. I think it may present as one kind of weakness for years before “coming out” as ptosis and diplopia and other recognizable forms.
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I have also thought MG is a spectrum disease. The symptoms of MG vary widely among people, and may vary widely for one person over time.
There seems to be a lot evidence that people diagnosed with MG may have involuntary (autonomic) muscle involvement as well. For example ” Cardiac involvement in myasthenia gravis may take several forms, ranging from asymptomatic ECG changes to ventricular tachycardia, myocarditis, conduction disorders, heart failure and sudden death.” And ” In conclusion, our study results showed that MG patients had significantly more LUTSs (overactive bladder) than healthy control subjects and had worse LUTS-related QOL; therefore, amelioration of LUTS in MG is important. ”
So should the term “myasthenia gravis” be reserved for those with only striated muscle involvement? (You have MG, and some other disease.) Or does it make more sense to create a new constellation of diseases called myasthenia gravis? I think the latter, because as you said, patients are injured “… by restricting diagnosis and treatment to just the book definition of MG.”
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I recently had shingles and was given gabapentin, supposedly to relieve the pain. It didn’t, and made me feel really out of it — like all of my systems were depressed, drained. Some websites say that gabapentin should be used with great caution in MG patients. They also say it does not relieve the immediate pain of shingles; rather it’s for posthermetic neuralgia.
After going to the ER, an urgent care office, and my PCP’s office, I finally got a prescription for tramadol, which did relieve the pain. (There’s some hysterical reluctance to give adequate pain medicine these days.)