[Sharon Haw]

I’ve been using blue light glasses for 3 years. My MG is well controlled with medication so I don’t notice any difference when I use them or not, except for more eye strain without them. Everyone is different and although I don’t notice a difference now while my MG is stable, I really appreciate that you shared your positive experience with blue light glasses. My neurologist is going to allow me a trial with no medication this fall and I’ll be sure to use my glasses. Thanks for the tip!

[Sharon Haw]

Definitely heat – even cooking in a hot kitchen – and I have to wear my hair off the back of my neck and use cold water to cool my face and neck, or I get profuse sweating and even a sudden nose bleed. Also, more noticeable fluctuations in feeling changes in temperature even at night. I can be cold one minute and blazing hot the next. My temperature reading doesn’t change but I get really red flushing in my face when I get hot, exercise or even have a glass of wine (sigh – I miss having an occasional glass of wine). I also started getting purple hands (Raynaud’s disease) when my hands get cold. I live in a higher altitude in a cold climate and I have to have an air conditioner running and cooling scarf on my feet and legs in order to sleep in summer. I haven’t noticed cold affecting me at all.  I avoid trips to hot places during their hottest seasons. I will pay more attention to low pressure systems and my MG symptoms – I never considered there could be a correlation and we have a lot of pressure changes here. Thanks so much to everyone for sharing all of this great info – the more we understand about how environment and other conditions impact our MG symptoms, the easier it is to manage them and live our best lives!

[Sharon Haw]

My neurologist said there is no cure but remission is possible – he used the word remission Since he is part of 3 clinics, including the neuromuscular clinic at our local teaching and research university where I see him,  I assume he’s current on terminology. I’ve been stable for almost 3 years now and the plan is to reduce then eliminate immune suppressant medication this summer to see if I have gone into remission. He initially said to wait for 2 years of stability (relatively symptom free) but extended it a year. I paused medication for the 2nd to 4th Covid shots for two weeks each time and felt great, and I’m looking forward to this summer to see if I am in remission.

[Sharon Haw]

I’m in Alberta, Canada, and got a full dose of Moderna as my 4th shot on Feb. 27 (5 months after the 3rd shot of Pfizer. I had the strongest reaction yet – a super sore arm, a day in bed with strong chills and muscle aches – all gone within 24 hours after the shot. The most challenging part was getting reliable advice on pausing Mycophenolate Mofetil (Cellcept) for a week. The Canadian Rheumatology association disagreed with the US Rheumatology association that recommended stopping Cellcept for a week after the 4th shot to prevent it from suppressing the immune response to the shot. My neurologist was no help – said to keep taking Cellcept based on Alberta’s politically driven advice, but my family doctor had more current info from the BCCDC (in the province next to us) that supported the US Rheumatology association recommendation based on a wider review of the research. Based on that info, I stopped taking Cellcept by taking half the dose for 2 days before the shot, then zero dose for 7 days, followed by 2 days at half dose before going back to full dose. While I was off Cellcept, I had no difference in my MG symptoms. I’ve been a hermit for 2 yrs but since 2 weeks after the 4th shot, I’ve been going to limited appointments once a week for dental, medical and personal care, booking for first thing in the morning when the air is cleaner, and using either an N95 mask made in North America or an ASTM Level 3 mask which is more breathable, depending on the level of risk of airborne transmission at the location. I worked at home for the past 2 years and retired instead of returning to the office (I’m 67).

[Sharon Haw]

I babysit my 3-1/2 yr old granddaughter two days a week from 8am-6pm. She’s really energetic and due to the pandemic restrictions, as an only child, she’s had only 1 friend her age, so I’m more of a friend. The energetic activities are the most challenging. We’ve developed some compromises, such as we take turns dancing but her turn is much longer than mine. Grandma needs to sit down (my back gets tired) rather than stand so I  strategically placed chairs and benches. Her parents needed the most education about my MG. They signed me up to take her to a gym class for 3 yr olds where I had to participate the entire time – I did it but needed a day of recovery. Next time was an art class (worked great) and a gymnastics class where I was only expected to watch, which let my granddaughter burn off some energy and have fun with no effort on my part. At my house, we do a lot of crafty activities and I modified some active games so she does the running around, e.g., I’m the goal keeper in soccer so she’s chasing the ball. She likes simple food that’s easy to prepare which makes it easier on me. So far, so good.

[Sharon Haw]

I was a government executive public relations manager until age 64 when I was injured walking to a meeting at our capital building with elected officials. I was off work for 3 months followed by 6 months of rehab several times per week. My job required me to regularly attend high profile in-person meetings and the capitol building had limited handicap access. I developed MG symptoms 3 days after returning to work at the same classification and pay but was reassigned to a 3 year project. I was diagnosed with MG a month later at a neuromuscular clinic in a nearby research university. Due to MG, I didn’t have the stamina anymore to do senior manager work 10-12 hours a day. Worst of all was the open office environment with a constant roar of talking, noise and catching every virus circulating from the 200 people in the project room. When the pandemic mandated remote work, I was much more productive as I gained an extra hour of sleep in place of commuting and had more flexibility in managing my health and energy levels. My MG has been stable since. I just retired at age 67. I am so thankful that my employer didn’t make me stay in the same job and allowed me to work remotely for the last two years. But the executive team did try to force all senior managers back into the open office setting in the summer of 2021 during the 4th wave of the pandemic but my neurologist provided a letter stating it was unsafe due to my medical condition. My plan had been to do pro bono public relations work for a couple of charitable organizations after I retired but I find I no longer have the mental and physical energy required, and I’m a hermit due to being on immune suppressants.

[Sharon Haw]

None on the list – in fact I’m allergic to some of them, namely all the penicillin, sulfa and erythromyacin type antibiotics. My MG ocular & upper respiratory symptoms appeared 3 days after I started back at work 3 months after surgery for a fractured ankle. After surgery, I had morphine and aspirin for pain, and an antibiotic not on the list but I did have a spinal injection anesthetic for the first time for the surgery. At work, coincidence or not, my boss has untreated MG (she was diagnosed but refused treatment) and we all worked in one room with poor ventilation and 200 people (50 flew in for varying periods from other cities & countries globally). 6 weeks later I was diagnosed with generalized MG based on electromyography, a nerve conduction study, and blood and other tests done at the local university neuromuscular clinic. I also wondered if there was a connection to the first spinal anesthetic I ever had for the ankle surgery, although when my neurologist asked me to think back a few years, I recall I occasionally had issues with lifting my feet towards the top of long flights of stairs and on walks, and would stumble, so the neurologist said that MG may have been present for years at a low level. Not sure what caused it to manifest itself when it did, but comment if anything in my situation sounds familiar.

[Sharon Haw]

Since I started this thread, I continue to work at home (since March 2020) and my health has steadily improved due to less exposure to others, less stress and more time to focus on wellness. I’ve kept my generalized MG firmly under control, with only a very occasional stumble if I’m tired.I’m 67 and my energy levels were in decline. I changed my full-time work schedule to 4 days (M-Th) @ 9 hours in 2019, and I’ve been using my vacation to take some Fridays off this year, with another significant improvement to sleep quality and energy levels. My employer tried to force me back to the office in August but my neurologist was willing to provide a letter to keep me working at home, at least temporarily, then the Delta variant rose here and the work at home order for non-essential workers was extended. I’m 300 lbs but I slowly lost 10 pounds over the past year and the slow downward trajectory continues. I have more time to plan and prep healthier meals and snacks plus, in 2020, I added two scheduled Health breaks into my work week – 30 minute Zoom calls with my personal trainer to review and adjust my workout to my energy levels. I also met my goal of keeping up with my 3 year old granddaughter. I’m taking 6 months off work before I consider a part-time job but only if it is work from home.

[Sharon Haw]

I’ve been working at home since March 2020 and within 2 months, my doctor cut my blood pressure meds in half. Definitely less stress since I’m at home alone all day.  I worked in an open workstation environment where I couldn’t concentrate and stayed 4-5 hours after work to get my work done. Now I work 4 days a week and still get all my work done with time to spare. One clear benefit for my MG is that if I have insomnia, I can sleep in and wake up with just enough time to shower and dress for work. I take my laptop to grab a coffee and cereal/fruit, then have an egg and toast for “second breakfast” on my break later. I could never have done that in the office! I have a much healthier lifestyle now and my neurologist said that if I continue to be stable, in summer he’ll retest me to see if I might be in remission. Fingers crossed.

[Sharon Haw]

My face flushes and gets hot to touch immediately from alcohol but it subsides quickly. I rarely drink and 1 glass of wine is my limit but even that gives me insomnia that night. My neurologist said to avoid alcohol and coffee. I’m only on Mycophenolate (CellCept) now. The flushing was worse when I was on Prednisone and Mestinon when I was first diagnosed in March 2019. I  had to stop taking Mestinon because after 3 months, my eyelids twitched so much, I could barely see to drive, and I had slightly elevated liver enzymes.

[Sharon Haw]

Road trips are the safest way to travel for me. I always get a bacterial respiratory infection within two days after a plane trip since I’m on immune suppressants. I waste precious vacation time being sick and finding a local doctor. After falling in NY due to MG muscle fatigue after walking those long blocks, in cities, I’ve learned to plan hop-on/hop-off bus, boat, train and any kind of riding tours vs. walking tours where finding public transit or ride shares isn’t reliable if my legs give out. We usually plan day trips from a central base that has lots to do for others if I’m tired. I plan a restful day before any events with advance tickets or that can’t be rescheduled. My key to travelling with MG is to keep the load, distance. and effort manageable, stop to rest and recharge before I get tired and plan wisely. I use travel organizers to save time & effort: a hanging toiletry bag, packing cubes, a light foldable day pack and the lightest suitcase I can find. Instead of a purse, I carry an ultralight pacsafe crossbody travel bag with room for medication, and lots of compartments to eliminate the need for a wallet, tablet case, etc. Clothing and shoes created for travel are usually packable, light, washable and quick drying. I found reasonably priced travel (and even camping/backpacking) products online and I pack the absolute minimum. Road trips with my own vehicle allow me to bring more but I’ve made rentals work, too, except most airports require a lot of walking to pick up the rental. I accepted that I probably won’t be able to cross many trans-ocean trips off my bucket list due to MG but I’m fortunate there is plenty to see and do in North America.

[Sharon Haw]

Pfizer 1&2 in March/April, 3rd dose Sep.22. My neurologist doesn’t recommend stopping Cellcept but I reduced the Cellcept by 1/4 for a week before &after for first 2 jabs, had no reaction after first, & very mild tiredness/chills for second. I read a Johns Hopkins study that included Cellcept & dosage reduction was done before & after jabs. Too small a study to be conclusive. But I reduced Cellcept dose by 3/4 two days before third jab & it will stay there for 2 weeks. Greater fatigue, chills & soreness on day following 3rd jab. Lasted 24 hours. Really mild reaction on second day. Mostly chills no fever. Hope the  stronger reaction translates into antibodies this time.

[Sharon Haw]

Your post was clear – my post agreed on the importance of regular blood tests to monitor the liver. I probably shouldn’t have mentioned that testing was also done in my case with Mestinon & continued once I was switched to Cellcept. Monitoring in my case confirmed that Cellcept is being tolerated.

[Sharon Haw]

Excellent point about liver enzymes which is one of the reasons I was switched from mestinon to cellcept. I had monthly blood tests until Covid hit. My doctors weighed the risk of catching Covid at a busy lab against a year of normal blood tests & decided I could forego the tests temporarily. Had a test recently- still normal.

[Sharon Haw]

I’m on 2000 mg mycophenolate mofetil (cellcept) per day for the second year. I was diagnosed with generalized MG a month after my eyelid drooped, and was on steroids and mestinon the first year, then weaned off steroids and switched to cellcept because mestinon was making my eyes twitch so hard I could barely drive. My neurologist says the cancer risk is rare and most cases occur after decades of taking this medication, and my family doctor does a very thorough annual cancer screening. My symptoms have been under control since I was diagnosed, and the most troublesome side effect I have from cellcept is due to immune suppression. I’ve had one infection after another. 8 months of sinus infections and antibiotics, a bladder infection, carbuncles (boils), a return of acne, fungal infections in skin folds, etc. I have to shower and dry thoroughly daily with antibacterial soap and use anti-fungal ointment or spray in certain spots. I’m really sensitive to overheating but less so with my hair up and if I walk long distances or climb stairs, I have to be careful I don’t trip due to not lifting my feet as high but that rarely happens. Overall, I live a pretty normal life. I’ve also noticed that I get restless legs at night more often and more intensely. My family is prone to restless leg syndrome but taking magnesium usually controls it, except magnesium is not recommended for people with MG so I can’t take it anymore. I have insomnia more often, too, and sometimes I only get 1 hour of sleep. That’s apparently a side effect of cellcept but I’m on other medications at very low doses for other conditions that also affect sleep. I had my annual review with my neurologist today and asked if I could reduce the dose of cellcept since I’ve been so stable, and he said to ask him again in a year because it’s recommended that there be several years symptom-free before reducing the cellcept dose, and I’m almost there. I’ve found that most health care professionals have heard of myasthenia gravis – it was my optometrist who recommended I see my family doctor when my eyelid drooped because it could be MG. Then my family doctor, who has an autoimmune disease, too, did some basic tests for MG and referred me to a rapid assessment neurology clinic where they did a series of tests, including the one with electric currents that revealed all of my muscles are affected. My neurologist is associated with this clinic at a research university and the interns at the clinic are always wowed that they’re meeting someone with MG because they’re taught that it is quite rare. I realize I’m very fortunate that it was diagnosed so quickly and accurately and that I’ve stabilized long term.

[Sharon Haw]

I also use a portable A/C with dehumidifier in summer and recently added a larger room portable true HEPA air cleaner to my office, which I move to my bedroom at night. In winter, I swap the A/C for a humidifier since the HEPA air cleaner removes some moisture from the air. It’s important to get the type of true HEPA air cleaner without ionization. It’s super quiet and has significantly reduced my upper respiratory MG symptoms and eliminated the need for medication to control them. My generalized MG started with sudden profuse nasal discharge and my right eyelid drooping, and with my MG diagnosed and under control, I was still getting the sudden profuse nasal discharge at least once a month, plus a chronic cough. I’ve only had it one time and the cough is gone since getting the HEPA air cleaner 6 months ago. The cleaner and 6 month filters aren’t cheap but they are way cheaper than what I was paying for medication to control those symptoms. I’d be interested in hearing what has worked for others who have respiratory symptoms related to MG.

[Sharon Haw]

Ronald, you have my heartfelt sympathy. I realize that working from home or different work schedules is not possible or even desirable for everyone. My mother had dementia for the last 10 years of her life and since my MG didn’t emerge until after she passed, I can’t imagine how challenging it is for you to deal with MG on top of working full-time and helping your sister.