Barbara E.

Even before MG, I preferred warmer season (beaches vs ski trips). But, at a point when my MG symptoms affected my breathing, I noticed that it was easier to breath cold air. My doctor said that it was typical for MG patients. Still, my hands and feet weren’t happy standing out in the cold snowy air.

When my doctor switched me from Pyridostigmine 60mg to the extended release 180mg formula, I was thrilled at the idea of only needing 1 dose daily. But, it didn’t work out as I expected.

The ER 180mg formula’s expected duration is less than I thought, which is 2.5 times the original formula. The result was that I still had big gaps and e…[Read more]

About a month ago, I had a colonoscopy and tried my best to avoid problems. This was not my 1st colonoscopy by a long shot. But, my others weren’t performed while my MG symptoms were uncontrolled. I scheduled my appointment to be 2 days after my weekly Ig infusion and followed all the prep instructions carefully. Before the procedure. I spoke to…[Read more]

I was an IT Specialist with over 20 years in PC/network/web areas of build/upgrade/troubleshoot, taught dozens of applications, created customized applications, webmaster and eGov oversight. Most of my career was with several U.S. Federal government agencies and often included traveling all over the U.S. and its territories.

After my MG…[Read more]

Hi Alan,
Your plan makes sense. I’m just trying to figure out why some doctors prescribe one medication vs another. Of course, the fact that we all vary in our symptoms and meditation response, makes seeing any pattern more complex. I’ll most likely never get a complete answer.
Still, thanks for clarifying your situation.
Barbara

Hi Alan.
I was wondering… Since you need Mestinon at night, is there any reason that your doctor hasn’t switched you to the extended release formula? Mestinon 60mg lasts for approximately 4-6 hours (I’m at the lower end of that range), while Mestonin ER 180mg lasts about 2.5 times longer. I’m just curious if you were given a reason.
Thanks!
Barbara

Hi Jessica,
Under my cardiologist’s supervision. I’ve been very successful by following the low carb/high fat eating guidelines. His belief is that if his patients can manage their weight better, we’ll avoid diabetes (or have less problems with it) and will be much less likely to end up on his surgical table.

Basically, each meal should be…[Read more]

Don’t take being ignored!

If it was me, I’d meet with my doctor and talk about the pain and how its impacting my life. Pain isn’t visible or measurable, which makes it harder for others to understand unlike something solid (like a blood test). But, how the stress from it affects our lives is real. If you decide to do this, try to keep to ONLY…[Read more]

Exactly, Theresa!

Good thought, Teresa!
I’m taking pyridostigmine ER 180mg (4 times daily) and the instructions say not to split or crush the pills. So perhaps I can try taking the last dosage earlier to see if it helps avoid cramping. It it gets too late, perhaps skipping that dose would be best. It’s worth trying.
Thanks!
Barbara

You lucky dog, Gary! I hope it continues to go well for you. Since, I’m seronegative gMG, it’s not an option for me right now. I don’t know if the FDA will extend the approval for seronegative patients. But, think my doctor is hesitant to have me try it anyway for now. Later, I’ll have to wait and see…

Congratulations, Gary!

I’m looking forward to less/lighter clothes making it earier to get dressed. Plus, I’m most likely not alone feeling that it’s easier getting around without big piles of snow and ice sheets!! Welcome Sunshine!

Thank you, Norman. That was an extremely interesting article.

There may not be a single database with absolutely everything, but there are many that can be very useful. I’ve looked at several, depending on what I’m interested in locating. For example, the U.S. National Library of Medicine has https://clinicaltrials.gov where you can search by…[Read more]

My pyridostigmine (Mestinon) dosage has greatly increased during the lat 3 months. I hadn’t made a connection before, but have experienced an increase of very painful cramping in my feet during the night when my feet are in a pointing position under the bedcovers. The only way I can stop the cramping is to either stand up or flex my feet (opposite…[Read more]

Evusheld monoclonal antibody injections and the COVID-19 vaccines (Moderna, Pfizer or J&J) are not alternatives to each other. While the vaccines help YOU create antibodies against COVID-19, Evusheld actually adds/supplements COVID-19 antibodies. This is especially vital for those of us who might not (or won’t) be able to produce sufficient…[Read more]

Sorry, Jennifer, that you’ve joined the MG club. But now that you’ve been diagnosed. I hope you’re able to control your symptoms soon. Until then, remember that you must keep fighting for your quality of life. To do that better, knowledge is power!

MG is called the Snowfake Disease because it’s symptoms/treatments different for each of us. The…[Read more]

Gracious! You’ve had a terrible time. My diagnosis about 20 years ago was so much faster. After a sinus infection, I thought that I couldn’t open my eyes because of swelling. I was surprised when the ENT instructed me to see a specific neurologist. My ENT called to arrange my appointment, which was in less than a week. After a brief exam, he told…[Read more]

Years ago, I was surprised to learn that my MG symptoms were gone and no medication was needed. At that time, the neurologist said there was no way to know if it would last a couple months or for the rest of my life. Still, my MG history would affect certain medical decisions/options, such as I can’t be an organ donor (disappointed) or use Botox…[Read more]

Because I have a weakened immune system and MG, my immune doctor advised (and I received) the following:

* 3 full doses of Moderna vaccine (the original 2 dose series, plus 1 additional injection),

* 1 booster dose of Moderna vaccine, and

* 2  doses of Evusheld monoclonal antibody injections (2 injections each time) with 1 month between…[Read more]

This week has definitely been harder than usual. The morning after my colonoscopy exam, I woke to find my MG symptoms were much worse. My eyelid drooping let me see only a very little and arms/legs were much weaker (making walking/carrying things difficult). Though I’ve improved, I’m still not back to where I was before the proceedure. I assume…[Read more]