Norm

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.

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.

One of my first concerns would be their overriding my doctors; i.e., denying coverage of tests/procedures ordered by my doctors.

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

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.

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]

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]

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.)

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.

I watched all 12 seasons of Bones on Amazon Prime.

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?

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.

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?

Thanks Alan. I will get a pulse oximeter.

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.

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.

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.

Jessica,

Is that exercise video available online?

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.

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.