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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 8 months ago
As I’ve mentioned, I quickly went back to regular pyridostimine. If I take it every four hours while awake (60, 60, 30, 30 mg) I get the benefits (a quick-acting full-strength dose)and avoid the side effects, such as legs cramps.
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Norm replied to the topic Dressing Up for Hospitals and Appointments in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 8 months, 3 weeks ago
I like to wear what were my usual going-to-work clothes. They make me feel better.
A little off-topic: I’m going to have a total shoulder arthroplasty in a month. The operated arm will be in a sling for weeks. So then my wardrobe will be whatever I get get on and off one-handed.
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Norm replied to the topic Health Care and Amazon in the forum Healthcare and Myasthenia Gravis 9 months ago
One of my first concerns would be their overriding my doctors; i.e., denying coverage of tests/procedures ordered by my doctors.
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Norm replied to the topic Describe Your Journey With MG in 3 Words in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 9 months, 3 weeks ago
surprise — I had no idea what would cause ptosis and diplopia
relief — there was a definite diagnosis and a definite treatment
accommodation — life’s a bit different now, but not bad at all
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Norm replied to the topic First Signs of MG in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 10 months, 1 week ago
I wish I could find studies that better describe the link between MG and stress. It seems like our bodies think they should do something in response to a stress. It’s just that they have learned, and latched onto, the wrong something.
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Norm replied to the topic Chewing With MG Weakness in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 10 months, 2 weeks ago
I’ve migrated to only a select few soft foods and, like Mike, nutrition drinks (OWYN, Soylent, Atkins, Boost) — mostly just drinks since they always go down easily. And I always have a large iced orange juice. The cold seems to help my swallowing.
When I eat, I pay attention to what I am doing. And I alternate swallowing a (soft) food with…[Read more]
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Norm replied to the topic First Signs of MG in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 10 months, 4 weeks ago
Blurred vision was the first sign, although it was really double vision due to my eyes not tracking together. I had my eyes tested for new glasses and gave a couple of optometrists a lot of grief.
Then droopy eyelids. Then really debilitating double vision. I was sent to a neurologist who recognized MG’s symptoms.
But a couple of years before…[Read more]
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Norm replied to the topic What Are Your Summer Plans? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 11 months, 1 week ago
Before I retired, I had to travel — Field Service Engineer.
Now I’m content to work on the outside of the house during the summer, and the inside in the winter.
If we go anywhere, we continue to mask up and minimize contact. (Yesterday there were 101,711 new cases of COVID-19 in the US, 667 in our state.)
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Norm replied to the topic When Exercise Is More Than a Workout in the forum Nutrition, Supplements, and Exercise 1 year ago
I do about 20 minutes of stretching and strengthening exercises most mornings. I skip them if I’m going got cut the grass, etc..
Because of MG and arthritis I can no longer do aerobics. I used to think I could always fight my way back to vigor.
I’m with Rick on the effects of ice water. It, and other iced drinks, knock down my dysphagia.
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Norm replied to the topic What Is Your Comfort Movie? in the forum Mental Health, Self-Care, and Support 1 year ago
I watched all 12 seasons of Bones on Amazon Prime.
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Norm replied to the topic Mestinon Side Effects in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year ago
Pamela,
I have been trying to taper off of prednisone, hoping that azathoprine alone will do the job. I’ve read (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6690491/) that the recommended dosage is 2-to-3 mg/kg/day. Is that the range of azathioprine that you have come to?
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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 1 year 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 1 year, 1 month 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 1 year, 1 month 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 1 year, 1 month 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 1 year, 1 month 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 1 year, 1 month 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 1 year, 1 month 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 year, 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 year, 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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