Sharon Haw

There are plenty of treatment options for MG. Many peer reviewed articles do point to MG patients having less healthy microbiomes. While research continues, probiotics supplementation does have a couple of risks to be aware of. The first is that the supplementation industry is NOT regulated and some manufacturers may mix bad bacteria in with the…[Read more]

20 years ago, I moved back to my home city, with a recurrence of allergy symptoms, sinus and lung infections, and new trouble climbing stairs. A lung function and stress test revealed that I tire sooner than normal when exercising but there was no follow-up. In 2018, I fractured my ankle and was off work for 3 months. 4 days after I returned to…[Read more]

Great information, Jodi! I’ve found that since my MG diagnosis, I’ve become anxious during cleaning and dental procedures because I choke frequently, especially when water is sprayed. During the height of the pandemic, hygienists weren’t using air or water power and what a difference! So they’ve noted on my chart to not use air or water except for…[Read more]

My neurologist (Canada) said the usual drug protocol upon generalized MG diagnosis is to treat for a year with low dose prednisone AND a longer term less invasive med like mestinon. I had elevated liver enzymes on mestinon which was replaced by mycophenylate. I was weaned off prednisone by 1 year & continued on mycophenylate alone.  Mycophenylate…[Read more]

Very mild fatigue for a couple of hours after the Evusheld shots but no other reactions. Not even sore at the injection sites. I had to wait 14 days after my Covid symptoms were gone to get the shot. I got Covid just as I was due for my next booster (5 months) but Paxlovid (antiviral pills) really helped. I can’t get my vaccine booster until 14…[Read more]

After 3 years, last week my neurologist reduced Cellcept (Mycophenylate Mofetil) to 2  from 4 (500 mg) pills daily  to see if I am in remission. He said the current thinking is that MG doesn’t go into true remission and that the symptoms are lurking in the background at levels that aren’t noticeable to the patient and could easily be triggered. H…[Read more]

Yes I have Covid now. My first symptoms were Aug. 19, 2022. I had 4 shots, but was due for a full booster on July 24, 2022. Foolishly decided to wait for a bit to hear when variant booster would be available. Learned I could have had Evusheld antibody shots as preventative but I have to wait until 14 days after Day 1 of symptoms. Initially, bit of…[Read more]

I’d be interesting in hearing about anyone’s experience with Evusheld as well and if they had it after having had Covid or before.

I fractured my ankle requiring surgery and was off work for 3 months. At the end of the third day after I returned to my very stressful, high-pressure job, I started sneezing and had profuse nasal discharge. My left eyelid felt unusual and when I looked in a mirror, it was drooping. The sneezing and runny nose stopped after an hour. Later that…[Read more]

I’m on 2000 mg Cellcept per day and I’ve noticed facial puffiness, constant skin and other infections, tremors in my hands/arms while exercising, fatigue and a marked change in sleep pattern. I used to have trouble getting to sleep, now I am so tired that I fall asleep right away but wake up fully alert usually 2 or 3 hours later when its too late…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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 muscle aches – all gone within 24 hours after the shot. The most challenging part was getting reliable advice on pausing Mycophenolate Mofetil…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]