[Barbara E.]

When my eyes started to droop, my primary care physician ordered the blood test to speed up the process when I’d eventually be able to see the neurologist.

Keep in mind that a negative blood test can be an indication of seronegative MG (meaning that it’s an unknown antibody). This was my case and it allowed me to save time by moving to the next test with the neurologist.

[Barbara E.]

Hi Richard.

First, I think many confuse remission with symptoms under medical control. In my case, MG started in 1990s with mostly drooping eyelids and fatigue. Over years, it worsened and I was about to start IVIg treatment when I suddenly loss all control of my limbs. So IVIg treatment started after massive steroids in hospital. On the 3rd day of treatment, my eyes opened and limb muscle control started returning.

I still took Mestonin (pyridostigmine) over the next several months and noticed what appeared to be returning symptoms. When tested, the results showed that I was no longer producing the AChR antibody and meds were causing symptoms. The doctor said there was no way to know how long it would last.

For the next 13 years, I was in remission and needed no medication/treatment. It was wonderful and even allowed me to care for my husband during his last years. But, about 3 years ago, my eyelids started drooping again and I knew it was back. This time, test results showed that I was seronegative. (Go figure!) Since then, I’ve worked with my doctor to try to medically control my symptoms and live as full a life as I can. Maybe, I’ll be lucky enough to achieve remission again. Who know!

Good luck and hang in there!

Barbara

[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 kit to you) and check their online search for neurologist who specialize in MG in your area! It’s a wonderful sourse!!

[Barbara E.]

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 injections. The pharmacy called me to schedule my appointment.

Upon arrival, I was given the required COVID-19 15-minute test to ensure that I wasn’t currently ill. Once cleared, I was given 2 injections to divide the dosage. My initial surprise was that the injection wasn’t given in my arm! After injections, you must wait 30 minutes in case of any reaction. I waited in my car and a staff member came out to check on me every 15 minutes. I had no discomfort or reaction and was allowed to go home.

The total time was about 1.5 hours from paperwork to the end. I was very glad that I was able to get Evusheld injection because of my weakened Ed immune system and I’ll do it again, if advised!!

[Barbara E.]

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 possible and adapt as you may need. With luck, you might even go into remission, which I did for 13 years.

For the best results, you must work with a great neurologist or neuroimmunologist, who specializes in neuromuscular disorders, like MG. Also, learn as much as you can to help understand and advocate for yourself.

Start by checking online information available from the Myasthenia Gravis Foundation of America (MGFA), other medical websites (Johns Hopkins, Mayo Clinic, etc.) and even YouTube. Knowledge is power when added to your determination to fight for your best quality of life! Best of luck!!

[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.

[Barbara E.]

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 eventually increased to 4 doses a day.

I have a long history of meditation not lasting as long as expected. So, the extended release formula may work differently for you. Plus, I’m still glad that I’m taking pyridostigmine ER 180mg, since my alternative would most likely be swallowing the standard formula by the handful each day!

[Barbara E.]

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 the GI doctor and anesthesiologist about my MG and explained how certain medication (including many anesthesias). I was given the OK to continue taking my pyridostigmine with a little water up to the start of my procedure.

Unfortunately, my MG symptoms greatly increased for several weeks after the proceedure. I couldn’t open my eyes and had trouble controlling my limbs (making walking extremely difficult). I assumed that it was because of the anesthesia used (couldn’t find what was used in my medical notes). During my next MG appointment, my doctor said that he thought my symptoms increased due to the “trauma” of the procedure, which might be impossible to avoid because of my twisted colon.

So, I decided to let the GI doctor know about my reaction in the hope that my next time (in 3 years) can be handled differently. Meantime, I plan on seeing how orhers deal with things like this for future reference.

[Barbara E.]

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 diagnosis, ptosis often kept me from seeing well. The agency helped me adapt by providing me with screen readers (PC and portable) with in-office 1-on-1 instruction. They complied with my doctor’s letter stating my need to rest/nap during afternoons. After my doctor recommended that I retire and a myasthenic crisis, fellow employees donated sick leave to cover me until my disability retirement became official in 2008.

I was lucky to work with so many good folks for years and these managers and coworkers were supportive of me. But, some managers were definitely NOT supportive of employees with health issues – even if their work was consistently tremendous. So, it was not surprising when they were successfully sued for discrimination by a colleague, who had a different medical condition! I don’t miss those malevolent egomaniacs, but still miss the many good, kind and funny people!!

[Barbara E.]

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 between 5-10 g of carbohydrates. It’s simply real food and I’ve never had any trouble with being hungry or finding options when eating out. If I want to eat fruit, then I choose something like blueberries or raspberries (love ’em with whipped cream), which have less carbs than other options. At times, I’ll eat anything that I want — like my birthday’s chocolate lava cake a la mode — and still loss during my next check-in.

When I’ve had trouble swallowing, I’m able to make choices that weren’t difficult to swallow and still kept me on track. Also, my weightloss hasn’t been stopped during times when my symptoms kept me from being physically active. I’ve been thrilled by my progress and plan to continue!

If you want to know more details, just let me know or look for other info sources online. Good luck!

[Barbara E.]

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!

[Barbara E.]

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!

[Barbara E.]

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 of pointing my toes). I was going to mention this to my podiatrist next time, but may need to reconsider what may be the cause first.

[Barbara E.]

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 only thing that most of us find is that our condition keeps changing. Treatment must be constantly customized for YOU.

There are numerous treatment options, but I’ll focus on the usual 1st used medication. Mestinon (Pyridostigmine) is most often prescribed to MG patients in 2 variations – the original shorter acting formula and the extended release version. The original formula comes in 60mg tablets that takes effect in 30-60 minutes and last for approximately 4-6 hours. This medication is tried 1st because it’s easier to try different doses/intervals. But taking too much Mestinon can actually increase MG symptoms. So, the trick is to start on a lower dose and increase until you find what’s just enough to control your symptoms! If you’re taking at least 3 tablets daily, you may be switched to Mestinon ER 360 mg, which last about 2.5 times longer than the original formula. If needed, you may still need multiple doses through the day.

Also, your doctor may prescribe something to supress your immune system, such as Prednisone. Also, there are additional treatments, from surgery (thymectomy), immunoglobulin (antibody) infusions – either by intravenous (IVIg) or subcutaneous (SCIg) and/or plasmapharesis (antibody filtering). Plus, there are more options that you can read about online and you should always discuss with your doctor any recommended options.

I hope you find what works for you soon. Meanwhile, be gentle with yours and eest when needed.

Good luck & take care!
~Barbara

[Barbara E.]

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 me that he was certain that I had MG, but still ordered the bloodwork.

No one can know everything – not even specialists. I don’t know where you live, but think you should consider checking an MG website for a neurologist or neuroimmunologist with a stronger knowledge in MG. I’ve used information from the Myasthenia Gravis Foundation of America (MGFA), who has a webpage to look up MG specialists by location. Then check their background online and speak to someone in the office about the doctors experience in dealing with MG. If you’re still having problems, the doctor should want to see you every few weeks or monthly and encourage you to call if you have any issues/concerns. Life is too short to tolerate uncaring jerks! Stay strong and push for what you need!!

[Barbara E.]

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 (which I never wanted anyway). I initially said that I was asymptomatic, but several doctors told me that I was in remission. So, I switched to saying MG in remission. But, its no surprise that some doctors don’t agree to the terminology. My remission lasted for almost 10 years before my MG symptoms returned. I hope yours will be gone forever! Enjoy it and dance!

[Barbara E.]

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 doses.

Plus, she recommended that I should plan on getting another booster 6 months after the last Evusheld injection.

My only reaction was a red, raised sore area around the Moderna injection sites that faded within a week. There was no reaction to the Evusheld injections.

[Barbara E.]

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

[Barbara E.]

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

[Barbara E.]

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 this topic to hopefully keep your doctor from being distracted by other issues. Keep fighting for your best quality of life!

[Barbara E.]

Exactly, Theresa!

[Barbara E.]

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

[Barbara E.]

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 topic or medical condition, along with options like location and many other criteria (recruiting, completed, etc.).

Other resources include PubMed Central, NIH and many, many more. If you search online for database medical studies or trials, you’ll see lots of option that are either open for use to all or requires a free registration.

Good hunting!

[Barbara E.]

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 antibodies on our own. As advised by my doctor. I received the 4 vaccine doses (3 full strength and 1 booster). 2 weeks after my booster, I received the Evusheld injections. Then, a month later, a 2nd dose of Evusheld injections. My doctor still recommends that I should get a 2nd booster vaccination later this year. In case of doubt, talk to your doctor.