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Norm replied to the topic Mestinon 60 mg verses Mestinon XR 180 mg in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 4 days, 21 hours ago
I tried pyridostigmine ER for 3 days, and it didn’t work for me. I had a bad incident of not swallowing.
My guess as to what happened is that the extended release never reached some threshold level of pyridostigmine in my blood. I’m back to taking the regular drug 3, sometimes 4, times per day and am doing well.
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Norm replied to the topic Mestinon 60 mg verses Mestinon XR 180 mg in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 2 weeks, 2 days ago
I will start the pyridostigmine ER on Monday or Tuesday.
Apparently I am charged the same, after insurance, for 30 or for 60 pills! If the doctor prescribes 2/day, I get 60 for X dollars; if he/she prescribes 1/day, I get 30 for the same X dollars.
Have any of you encountered the same kind of billing?
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Norm replied to the topic Mestinon 60 mg verses Mestinon XR 180 mg in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 2 weeks, 3 days ago
Thanks Alan. I will get a pulse oximeter.
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Norm replied to the topic Mestinon 60 mg verses Mestinon XR 180 mg in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 2 weeks, 3 days ago
Hi Amy,
I just texted my neurologist about extended-release pyridostigmine (Mestinon). Waiting for a reply. I’ve been taking 150 or 180 mg every day, but have been having difficulty swallowing late in the day, and wake up late and groggy. I don’t know how well or poorly I breathe while asleep. -
Norm replied to the topic How Do You Remain Physically Active? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 3 weeks, 5 days ago
Got it. Thanks.
I may add some of their exercises to my daily routine.
They said MGers should only exercise on alternate days. For me exercising briefly every morning is better, unless I’m going to be doing something physical, such as mowing the lawn.
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Norm replied to the topic How Do You Remain Physically Active? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 3 weeks, 6 days ago
Thanks Jessica.
I found Video #1, but have not yet located the introductory video or the others.
BTW, you can put links in your responses here. The moderators check that there’s nothing harmful, then post your message.
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Norm replied to the topic How Do You Remain Physically Active? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 4 weeks ago
Jessica,
Is that exercise video available online?
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Norm replied to the topic How Was Your Week? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 month ago
My MG did not change much — some more weakness and pain in my arms and shoulders. I continue to taper off of prednisone.
There’s no peace of mind while the brutality in Ukraine continues — and the threat of insane Russian escalation. We’ve bought a solar/crank emergency radio and are working on our emergency plan.
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Norm replied to the topic 4th shot? in the forum Coronavirus (COVID-19) and Myasthenia Gravis 1 month ago
They say covid-19 will remain endemic (regularly found and very common among a particular group or in a particular area).
I wonder if yearly shots will be necessary, possibly combined with the flu vaccinations.
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Norm replied to the topic How Do You Remain Physically Active? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 month, 1 week ago
Robert,
One consolation that I’ve found is that, being retired, I can now do things at my own pace. (Sometimes I may spread a 2-hour project over 4 days, etc..) During my working life, there was always the feeling that I should rush.
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Norm replied to the topic How Do You Remain Physically Active? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 month, 1 week ago
First thing out of bed, I do a moderate set of stretching and strengthening exercises. My muscles are at their best at that time. And I keep the routine moderate, so that I look forward to it and don’t feel like it’s drudgery.
I include caffeine (about 4 cups of coffee worth) in my morning meals. Then I feel energetic for the afternoon.
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Norm replied to the topic Pain and Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 1 month, 1 week ago
Sheila,
Every day I adjust my Mestinon (pyridostigmine) in the evening so that my calf muscles are just shy of cramping when I go to bed.
Mestinon only lasts about 4 hours, so my dysphagia may act up before morning. Seems like a Catch 22.
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Norm replied to the topic Pain and Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 1 month, 1 week ago
Troy,
I found this: “Myasthenia gravis itself does not cause pain, but the weakness may lead to non-specific aches and pains. For instance, neck pain may occur because of weakness in the neck muscles.”
which is part of this MG article
I’m having sharp pains in my left should when my arm is in certain positions. My guess as to its cause is…[Read more]
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Norm replied to the topic Pain and Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 1 month, 2 weeks ago
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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Norm replied to the topic 4th shot? in the forum Coronavirus (COVID-19) and Myasthenia Gravis 1 month, 3 weeks ago
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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Norm replied to the topic Spring and Self Care in the forum Mental Health, Self-Care, and Support 1 month, 4 weeks ago
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…[Read more] -
Norm replied to the topic D Symptoms of Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 2 months, 1 week ago
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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Norm replied to the topic Eyesight Causing Driving Difficulties in the forum Healthcare and Myasthenia Gravis 2 months, 2 weeks ago
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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Norm replied to the topic Eyesight Causing Driving Difficulties in the forum Healthcare and Myasthenia Gravis 2 months, 2 weeks ago
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…[Read more]
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Norm replied to the topic Eyesight Causing Driving Difficulties in the forum Healthcare and Myasthenia Gravis 2 months, 3 weeks ago
Dev, when my doplopia 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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