[Barbara E.]

I’m in my early 70s and widowed, so I’m living with MG alone. In spite of persistent ptosis affecting my vision, I feel that constant, extreme fatigue is my greatest obstacle. I’m use a CPAP machine and take 3 different prescribed stimulants with little effect. What else can I consider to hopefully help?

[Barbara E.]

When we get sick… Suggestions for dealing with illnesses (like cold, flu, and other viral/bacterial infections) without making MG symptoms worse (hopefully).

[Barbara E.]

My greatest concerns are fatigue and isolation.

The extreme fatigue hinders my ability to do many things, including maintaining my home. Since I live alone, I don’t have anyone to help at home.

In addition, vision problems (ptosis and strabismus) make driving impossible. This mountainously affects my ability to get out for both errands and social reasons. I was so accustomed to venturing out before on my own, but now I’m trying to adapt.

[Barbara E.]

Extreme fatigue and eyes (ptosis and strabismus). That’s continued in spite of weekly SCIg infusions, pyridostigmine and Provigil. This is all the harder because I live alone.

[Barbara E.]

I switched from monthly IVIg to weekly SCIg several years ago due increasing vein problems and localized reactions. After the training session with a nurse, I continued with self-administrations. After the initial couple times, this has been so very much easier for me and allows me to schedule my sessions around other events. Plus, it’s reassuring that I can continue treatments during travel. I’m so much happier with SCIg!!

[Barbara E.]

I fell once back in 2007 when I loss control of my limbs, but not since then.

[Barbara E.]

To me, the extreme fatigue is the worse part! It makes everything seem mountainous. I’m working with my neurologist on how to ease this and other symptoms.

[Barbara E.]

After awhile, I had so much trouble that switching to subcutaneous Ig (SCIg) was recommended (tiny, short needles under the skin). This has been great because I was taught to do it myself each week at home, at my convenience – even when traveling out of town. It’s not painful and allows much better flexibility in my schedule.

[Barbara E.]

No one else in my family has MG.

[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.]

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 they don’t continue to overlook us!

[Barbara E.]

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 they don’t continue to overlook us!

[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.]

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 bullies!!

Good luck!!

[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