[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.]

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 that this was caused by the anesthesia – even though I explained to the anesthesiologist beforehand that MG patients frequently have adverse anesthesia reactions. The good news is that I won’t need to do this again for another 3 years!

[Barbara E.]

Because of a weakened immune system, I’ve administered weekly subcutaneous IGg treatments for several years before the pandemic. When Covid vaccines became available, I was instructed to receive 3 full doses of Moderna vaccine, and then a booster dose of Moderna 3 months after the last full dose. Each time, my only reaction was a the red, sore, slightly raised area around the the injection site that gradually faded in about a week.

15 days later, as instructed, I got the Evusheld monoclonal antibody injections (1 shot in each butt cheek to divide the load). Then, my doctor contacted me a month later and told me to get the Evusheld vaccination for a 2nd time. When my doctor instructed me to get Evusheld, she said that it was advisable to get the booster about 90 days after the last Evusheld injection to continue full protection.

Keep in mind that Evusheld is not the same as the preventative vaccines, like J&J, Pfizer or Moderna. They are ment to stimulate/teach your immune system to recognize the virus to allow your immune system to produce antibodies if/when exposed in the future. Evusheld provides antibodies to people, who might not produce any/enough antibodies on their own. Unlike othr Covid antibody treatments (given when you’re sick), Evusheld can’t be administered if you are currently infected. Therefore, they will first administer a rapid Covid test, which must be negative to continue. After the injections, you will remain onsite for an addition hour and checked every 15 minutes for any reactions (I had none).

The total for an Evusheld appointment (from paperwork to leaving) is approximately 1.5 hours and you will most likely have to pay an administrative fee ($100) separate from what is covered by insurance. Evusheld injections are expected to provide protection from the Covid virus for about 6 months, but are still not normally meant to replace Covid vaccinations.

I hope this information helps!

[Barbara E.]

The first thing to remember is that MG is called the “Snowflake Disease” because it varies in each of us.

Be careful about taking more Mestinon (Pyridostigmine) than prescribed because the trick is to hit just enough to help with your symptoms – the medication sweet spot. Too much pyridostigmine can be just as bad as too little –by actually increasing symptoms! Over time, most likely your medication will need to be increased, and even possibly decreased or even discontinued (like mine during a remission that lasted almost 10 years before returning). Eventually, you will learn more about how you respond to your medication. But it’s best to first talk to your doctor about what to do when you have a flare up. Don’t just sit back, push your doctor to find the answers that you need.

 

In my 40s, my ocular MG first appeared as ptosis, which was quickly diagnosed because my ENT referred me to a neurologist. In the beginning only a relatively small amount of Mestinon (Pyridostigmine) was needed to control my symptoms. Then extreme fatigue started, so Provigil (Modafinil) was added. Plus, during flare ups (usually after an infection), Prednisone would be added. Over time, the dosages all of these medications increased. Through all of this, I was fortunate that my husband never complained as he carried the weight of the day-to-day home duties and provided me with the love and support that I needed.

Over the years, my classification changed to generalized MG. By this time, my symptoms increased and expanded beyond just my eyes to include muscle weakness of my arms/legs and eventually breathing. Eventually, I was hospitalized due to total paralysis during a myasthenic crisis. During my15-day stay, I was given massive amounts of IV steroids to suppress my immune system followed by a multi-day IVIg treatment. This returned me to a functional level, so I could return home. After the improvement only lasted a few months, I followed my doctor’s advice to retire (disability) and focus on reducing stress and taking care of myself. Within the next year, I was shocked to be told that I was in remission and no longer needed any MG medication! My remission allowed my husband and me to travel and for me to enjoy many activities, hobbies and even dance again. And when my husband’s health declined, it gave me the ability to take care of him during his last years.

Now, that my MG symptoms returned last year, I find that the symptom that bothers me the most is the extreme fatigue. The drooping eyelids (ptosis) quickly expanded to arm/leg muscle weakness. I find that it’s much more difficult adjusting to having MG again – especially being on my own. But I’m determined to deal with my MG and find a way to still enjoy my life.

[Barbara E.]

I was diagnosed with MG over 20 years ago, but was in remission between 2008 and last year. Now that it’s back, I was already overweight and worried about gaining even more. Not only was it adding to my health issues, but I felt like any minute Greenpeace would try to drag my fat carcass back to the water while calling me Moby Dick! At one point, when my bloodwork came back, I had the highest insulin level that my doctor had ever seen. You know it’s bad when your doctor and his staff are all shocked! I knew things needed to change!

So I returned to a low carb/high fat food lifestyle last fall. I’m following a program under my cardiologist’s supervision. His belief is that if his patients manage their weight, less of us will become diabetic and we’ll be less likely to end up on his surgical table. It doesn’t require exercise. Several years ago (pre-pandemic), I met one of his patients, who was in a wheelchair and had lost over 100 lbs. to achieve his goal. You can be skinny and still be weak and stiff. So, what we eat affects our weight and exercise affects strength and flexibility. Of course, being physically active will help with weight loss, but I feel it’s also easier to become more active when I’m not so overwhelmed by weight.

Once I returned to the guideline of limiting carbohydrates to 6-10 grams per meal, my weight quickly started going down to my current loss of over 40 lbs. – along with my insulin and blood pressure levels, which are now normal. I’m not hungry at all, and feel very content with what I eat. The only thing that I sometimes miss is the various fruits that I use to enjoy, like citruses, bananas, etc. So I stick to the occasional lower carb fruit (like berries) instead. I’ve even been able to easily eat out with friends without drifting from the guidelines. After I get to a maintenance point, I’ll be able to try making variations to the plan to see what I can do without having a negative impact on my weight. But, for now, I’m very happy with my food and progress!

[Barbara E.]

Because of a weakened immune system (supplented by weekly SCIg treatments), I was instructed to get 3 full doses of the Moderna vaccine (instead of the normal 2 injections). The only noticeable reaction was a somewhat red, sore area at the injection site for over a week. Then 3 months later, I received my 1st Moderna booster vaccination (similar vaccine reaction as before).

2 weeks after my booster, I was advised and received the Evusheld monoclonal antibody injections (2 injections given to divide the needed dose between different spots). My immune doctor explained that Evusheld was to help supplement my antibodies and were expected to last about 6 months.

A head of time. I was told most of what to expect, including that I’d need to pay $100 for pharmacy’s administrative cost (the actual test/vaccine cost was covered). I was given a Covid-19 test and could only get the injections after getting a negative result.

I must admit that I laughed when I realized that the shot locations were my butt cheeks (not my arms). But she was very fast and it was painless. I was required to sit in my car for the next hour and the staff verbally checked with me every 15 minutes to ensure I had no reactions. After being cleared, I was able to go home.  The entire process took about 1.5 hours and I had no reactions afterwards.

A month later, I was surprised when my doctor advised me to get a 2nd Evusheld vaccine. But, I followed her advice and got a 2nd round of the Evusheld injections.

I’ve been told to wait until 90 days after the last Evusheld injections before getting a 2nd Moderna vaccine booster. Also, she mentioned that I should expect the need for additional boosters at some point in the future. I don’t like needles, but it beats getting Covid-19… especially when even a mild infection would make my MG symptoms worse!

 

[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.

[Barbara E.]

Ok, here we go… First, I’d recommend talking to your doctor about your travel plans. See what he/she recommends for various scenarios, including additional medication that you could bring in case needed. On my last trip, these as-needed medications included antibiotic/antiviral, Prednisone, and a few others. Luckily, my doctor and I have a good working relation and he trusted that I’d know when I’d needed to take something. If you’re traveling from a base point, you’re doctor may be able to give you contact information for someone to see if you become ill in that area.

For anyone on IVIg who might miss 1 or more treatments, ask your doctor if you can switch to subcutaneous infusions (SCIg) instead (at least while traveling). But you should try this ahead of time to allow enough time to practice and get comfortable with the proceedure before your trip. After a training session, we can administer SCIg ourselves without medical supervision to continue our treatments even while traveling. Also, Hizentra Ig vials don’t require refrigeration.

In addition, you should bring multiple copies (for luggage, carry on, etc.) of documents outlining your medical history, current medications and a list of medications that you (or MG patients in general) should/must avoid.

The last suggestion is to buy travel insurance! The many companies offering various policies for your trip could have various options. In addition to recovering money (all or part) for cancelled plans (flights, hotels, excursions) due to illness or injury. your destination may be an area where making emergency return travel difficult/impossible. For that situation, look for a plan that includes emergency evacuation transportation that will get you home (or your country) in a specified time frame. This can make the world of a difference to you emotionally and physically!

Of course, you may not want or need to do all of these things. But, depending on your health and travel situation, they may help. Have a marvelous and memorable trip!! Post pictures of you adventures for us to see!

[Barbara E.]

Wow! It sounds like I had a much easier time getting Evusheld and I’m not certain why. The only limitation was that it was only available in 2 pharmacies in my area. My immune doctor simply sent the order electronically and the next day, the pharmacy called me to schedule my appointment, which could be within days. For my 2nd Evusheld injections, I had to wait a week for their stock delivery, but still no difficulty. Once there, part of my paperwork was a form that I had to check which reason for getting the injections. But, it was all very easy and quickly finished. Perhaps, my doctor had it down to routine for her immune patients, which simply made it look easy to me.