[Barbara E.]

I have a rule: If I can’t see the dashboard, I don’t drive. Kidding aside, until recently, my lid drooping and blurry/double vision caused me to be functionally blind (complete with a white cane). My eyes have imprived and are open now, but vision is still blurry. I REALLY miss driving and hope to be able to drive in the near future! Until then, either friends/family pick me up or I use rideshare to get around.

[Barbara E.]

I had a similar experience to you, Russ. After living with MG for a decade, I became completely paralyzed had to be hospitalized for 15 days. Eventually, I received a 3-day IVIg treatment and could move again. Months later, I thought I was getting worse again. Then was told I was no longer producing the antibody causing my MG, so un-needed high dosage of Mestinon (pyrostigmine) was backfiring to cause my muscle weakness. The doctor explained that sometimes folks go into remission (no symptoms/no medication needed) after a crisis and the remission could last for weeks, months or even a lifetime. In my case, my remission lasted for 13 years before my symptoms returned in 2022. Luckily, there are more approved treatment options now than we had all those years ago.

[Barbara E.]

Most definitely! At my worse, I was trained and used a white mobiliity cane just to walk around due to severe ptosis with blurry/double vision. If I couldn’t even see the car steering wheel, it was not safe for me to drive. That was a devistating shock to my lifestyle because I live alone. I didn’t want to totally rely on friends helping me get around, so I used various alternatives (MetroAccess, Lyft, Uber, etc.).

Luckily, after several years of multiple treatments (pyridostigmine, SCIg infusions, etc.), my eyes opened towards the end of January 2025. My vision is still somewhat blurry (only reading a few words at a time) and still light sensative (can result is ptosis until I rest eyes). So, I’m working with my neuro-opthomologist to try for more improvement. I’d be thrilled to get to a point where I could drive again to easily run errands, go to a movie, and travel again! 🙏🏻🤞🏻

[Barbara E.]

Medically controlled symptoms is the goal to let us live as normally as possible. Of course, it’d be nice not to need infusions, immunosupressives, or neurotransmitters, or other meds. I look back fondly at my 13-year remission with no symptoms nor meds in the hope that it might happen again. (Sigh…) But, whatever it takes to improve my quality of life is worth the bother to me!

[Barbara E.]

In addition to my weekly Hizentra SC infusion and modafinil once daily (for extreme fatigue), I take pyridostigmine bromide daily – like most of us. My long-time 60mg tablets were later switched to the 180 mg extended release tablets.

I know the 180 mg extended release tablets are suppose to last about 2.5 times longer than 60mg tablets. But, when symptoms were really bad, they simply didn’t have the desired duration of effectiveness. About a year ago, I needed up to 5 dosages each day of the 180mg tablets. Luckily, as I improved, my dosage reduced to three daily and now twice a day. At this point, my doctor told me to listen to my body and adjust as needed.

[Barbara E.]

Between medication side-effects and being less active because of muscle weakness and fatigue, my weight definitely went up and up. Now, I’m working with my cardiologist to loose weight before I end up un his surgery!

I’m not certain if/how weight gain/loss affects MG, but I doubt being overweight would help. In my opinion, this definitely adds to our overall stress – both mentally and physically. And that can definitely impact our overall health and MG. Plus, all medication is (or should be) adjusted for our physical weight to be optimally effective.

[Barbara E.]

Plus, ptosis surgery can’t be reversed and fluctuating symptoms make getting it right extremely difficult. My neuro-opthamologist said it’s more successful for patients with permanent nerve damage (birth defect, trauma, etc.).

You may want to ask about trying ptosis crutches/ptosis glasses (thin wire bar added to glasses) to help ease eyes open. If you try this, it may take time to fine tune the crutches to apply only the pressure needed to open you eyes and let you blink (at least a little).

[Barbara E.]

FYI: Botox is contraindicated for any neuromuscular disorder patient – including MG. It’s been known to actually make symptoms worse. So, definitely discontinue using Botox unless your doctor feels it’s medically necessary!

[Barbara E.]

Definitely! On the milder side, eyes that are not aligned cause blurry vision. When the misalignment increases, double-vision results. I’ve notice that it can also affect my ability to judge distance. All of this can deeply impact our ability to function on a day-to-day basis.

[Barbara E.]

For me, my friends have luckily been great and steadfast. But, my MG fatigue and vision problems (drooping eyelids, blurry vision, and light sensitivity) prevent me from driving. This impacts my ability to go places independently – like meeting friends for a meal or event. They kindly offer to get me, but it often loses that spontaneous feeling of getting together. Plus, at this point, road trips to visit out-of-town friends have been replaced with phone calls. I still hope to improve enough to drive/travel independently again.

[Barbara E.]

When I was initially diagnosed in the 1990s, the only known MG-related antibody was AChR. The MG connection to MuSK was discovered in 2001 and LRP-4 in 2018 (I think). Those are just a few of the possibly thousands of antibodies produced by our bodies. I’m certain there’s more discoveries to come!

[Barbara E.]

I had a horrible allergic reaction to Levaquin before MG, so have avoided it since. Also, I and my doctors try to avoid any medication that’s listed as problematic for MG patients. I don’t want to make a bad situation worse.

As for cannabis, I don’t want to take any chances at this time.

I do find several MG support group zoom meetings helpful. Not only does it remind me that I’m not the only person dealing with MG, I’ve gotten many helpful suggestions from the other members. I found these groups through the MGFA website (started with local groups and attend other regions for special presentations).

[Barbara E.]

When I was initially diagnosed with MG in the 1990s, I was living with my incredibly supportive husband and working. It was hard, but many people were extremely helpful in both my personal and professional life. But, after about a decade, I had to retire on disability due to increased MG symptoms. A year later, I was thrilled to learn that I was in complete remission (no symptoms and no needed meds), which lasted for about 13 years. During this time, I was thankfully able to care for my husband before his death. About 3 years ago, my MG symptoms returned and I’ve struggled since then to take care of myself (fairly well), maintain my home (badly) and keep up my relationships with family/friends (essential for mental well-being). Right now, I use a mobility (white) cane to get around and can’t drive, but I dance (and other activities) with friends/family as often as possible. It’s all hard, especially without my loving husband (whom I still horribly miss all the time). But, my guidelines been to prepare for the worse, hope for the best, and fight for my best life possible!

[Barbara E.]

I’ve encountered several medications that made my MG worse, including a too high dosage of pyridostigmine bromide (Mestinon). Since then, before starting any new medication, I and my doctors always check online to see if there’s any MG contraindications reported. It doesn’t catch everything, but helps!

[Barbara E.]

For me, the problem wasn’t the initial monthly IVIg, but increasing issues over time. In addition to having a terrible time finding a usable vein, I started experiencing increased allergetic reactions (hives). So my doctor switched me to weekly subcutaneous Ig (SCIg). The lower weekly dosage was easier to handle and the tiny needles don’t hurt. Plus, I was taught how to do it myself at home, which gives me the freedom to adjust my schedule and travel. There was a learning curve, but I greatly prefer SCIg over IVIg!

[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.