Barbara E.

Paul, I agree with the others that you sound like you have MG. (Welcome to the club that none of us ever wanted to join.) Unfortunately, not all neurologists really know about MG. I’d recommend checking the Myasthenia Gravis Foundation of America website (myasthenia.org) for great information about living with MG (they’ll send a free new patient…[Read more]

I received Evusheld injections in both February 2022 and March 2022. The order for a 2nd round was surprising, but my immune doctor felt that the initial injections wouldn’t stimulate my immune system sufficiently.

In both rounds, the prescription was electronically sent by my doctor to 1 of the 2 pharmacies in my area that could give Evusheld…[Read more]

I hear you, Maureen!

There is nothing more infuriating than having a wonderful doctor that leaves and being passed on to a ego-driven jerk! I’ve gone through that many times over the years.

Congratulations on dumping him and hopefully finding a good doctor who will work in partnership with you! Life is too short to subject yourself to…[Read more]

You mentioned probiotics, which may help depending on your GI issues. Yet keep in mind… There are many treatment options for MG, but no cure yet. Treatmwnts must be customized for each of us because we all respond differently to MG (called the “snowflake disease”) and the treatments. The goal is to lessen and control your symptoms as much as…[Read more]

After a total remission of gMG (no symptoms nor medication) that lasted for 13 years, my doctor confirmed it’s return in 2021. But, unlike my previous round, it turns out that I’m seronegative!

So it’s been disappointing to find that none of the newly FDA approved medication is for us! I assume that our rarity might make studies difficult. I hope…[Read more]

After a total remission of gMG (no symptoms nor medication) that lasted for 13 years, my doctor confirmed it’s return in 2021. But, unlike my previous round, it turns out that I’m seronegative!

So it’s been disappointing to find that none of the newly FDA approved medication is for us! I assume that our rarity might make studies difficult. I hope…[Read more]

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]