[Sharon Haw]

I’ve wondered if the recent talk of “generalization” or the progression from ocular to gMG is accurate. Although emergence of my ocular symptoms triggered the need for testing and diagnosis in 2019, which revealed I actually had gMG with no overt symptoms, looking back 20 years I recalled the results of a stress test that showed low exercise tolerance: my muscles tired much faster than others with my fitness level and age. I also had been tripping going up stairs for 5 years before diagnosis, and when walking for 2 years. In my case, the ocular symptoms actually came later than the generalized MG symptoms, it was simply a matter of the ocular symptoms couldn’t be ignored. It only took a month for me to see a neurologist and be diagnosed with gMG.

As to gMG’s progression, I was relatively symptom free on mestinon and steroids in the first 6 months, then a low kidney function test and a mestinon side effect of twitching lower eyelids had me switched to cellcept in late 2019. I led a relatively normal life for five years except for infections due to taking immune suppressant medication. Then I caught a respiratory virus which my doctor said was likely RSV or Covid even though I didn’t test positive for either. It lasted 6 months, I cracked a rib coughing, and I got an MG flare that knocked my energy out.

It’s been a long road back and I had another flare this February when I went to Disneyland on an unseasonably hot day with my family. Despite preparing by building stamina ahead of time, and using a scooter on site and not overdoing it, I had zero energy for weeks afterwards and could only walk a few feet before getting out of breath. My neurologist had prescribed Mestinon as a top-up for when I noticed symptoms, so that helped me get through it but heat intolerance is still an issue at any temp above 75F/24C and I’m only up to walking for 35 minutes at a slower pace. My neurologist is slowly reducing my dose of Cellcept by 125 mg daily every 2 months to find a dose that controls my MG without causing constant infections.

I still haven’t reached the energy level I had in my first 5 years after diagnosis but focusing on building strength and stamina, eating healthy and getting good sleep is getting me closer all the time. I regularly see a dietician and personal trainer, and I start seeing an occupational therapist next week who is going to help me get started in Tai Chi. I find the support in private sessions very valuable in building foundational skills and coordinating activities so I don’t get overwhelmed.

[Sharon Haw]

I had some double vision when I was first diagnosed in 2019 which disappeared once treatment started. Six months later, I had to switch from Mestinon to Cellcept because a Mestinon side effect was making my lower eyelids twitch so bad I could barely see when I was driving. I still use Mestinon on demand as augmentation to control occasional MG symptoms, but never for more than a couple days to avoid the twitching side effect.

[Sharon Haw]

The Myasthenia Gravis Foundation of America held an excellent webinar on diet and fuelling led by a dietician on May 19 – the replay can be viewed at https://myasthenia.org/mgfa-events-webinars/webinars/wellness-series/

[Sharon Haw]

Every so often, I get a run of several weeks of really bad insomnia and restless legs. It’s like someone turned off my sleep switch. I don’t feel tired but I’m exhausted and I have to void every hour instead of once or twice overnight. I’ve had signs of stress lately but no apparent cause – my psychologist says a lot of people are stressed by the global economic uncertainty, warfare, and disasters lately whether they are directly impacted or not. I’ve had sinus congestion for the past 7 months which wakes me up, too. I stop swallowing, the congestion gums up and blocks my nostrils. It feels like whatever keeps my sinuses and nasal passages open isn’t working anymore. I’ve had many nights of zero sleep or 1 or 2 hours at most. I’ve followed all of the protocols and tried many non-addictive medications, and nothing works anymore. Taking 1/4 of a trazodone pill to get to sleep occasionally used to work great, but now it makes me restless and I wake up 2 hours later and can’t get back to sleep. Because of my MG, I can’t go to the gym or on walks on days I don’t sleep because I get out of breathe after 5 minutes or I have to lay down for the rest of the day (and not sleep) with exhaustion and aching muscles. I haven’t slept more than 0-3 hrs for the past week and today I’m taking an Uber to a doctor appt instead of driving.

[Sharon Haw]

I have noticed more energy from certain fresh foods – fresh blueberries are the most noticeable so I have them everyday at breakfast. I only supplement with Vitamin D. I try to get all my nutrients from mainly fresh and home prepared foods but dang all that chopping and prep is tiring at supper time so I cook larger quantities to cover several meals and freeze leftover meat in portions for salads, wraps, sandwiches. I track & balance nutrient content by logging foods in an app – I use the My Fitness Pal app but would be interested in hearing what apps others use.

[Sharon Haw]

Besides generalized MG (diagnosed 2019), I have asthma, seasonal allergies, high blood pressure (well controlled), early kidney disease, morbid obesity, acid reflux, Attention Deficit Disorder, Reynaud’s disease, Dupuytren contracture, an ankle fracture that is 90% recovered, early cataracts and due to posterior vitreous detachment, I have floaters in both eyes. I take Cellcept (2000mg daily) and have frequent UTIs, sinus and skin infections. Most of these conditions are reasonably controlled but the obesity and MG are the main drivers.

[Sharon Haw]

I attended the MGFA Conference for the second year virtually last week for free as a patient. I prefer virtual attendance because I take Cellcept (immune suppressant) and avoid large gatherings. This year, I walked away with a few useful bits of info that I will discuss with my neurologist at the next appointment. One takeaway was the sheer number of new developments in MG treatment on the horizon. Another stand-out tidbit I learned is that it takes a long time for some immune suppressants like Cellcept to become effective and conversely, to wean off it. If one is reducing a Cellcept dose, it needs to be done very slowly, like reducing by 500 mg in a year, to remain stable. Which explains when my neurologist said a couple of years ago that I could try going off it to see if I was in complete remission, he said at the time there are no guidelines for weaning off Cellcept,but I could try cutting the dose in half (1000mg less per day). Unfortunately, MG symptoms like hand weakness and double vision started to return after a month on the lower dose so I went back to 2000mg per day. I experience a lot of breakthrough infections from what appears to be too much immune suppression and my neurologist suggested again that we try to reduce the Cellcept dose. I now know that I need to discuss with him how to slowly reduce the dose from 2000 mg per day to 1500 mg per day over the next year to see if that will make a difference in the number and frequency of infections I get. So attending the conference has given me a lot of hope.

[Sharon Haw]

There may be a connection. I had the intermittent burning smell for years, even 5 years before I was diagnosed in 2019. It smells most like wood smoke (not burnt toast like a stroke sign), has lasted up to 3 days and a few times was triggered by brief exposure to actual wood smoke. A brain scan found a dark spot at the base of my brain stem and my neurologist suspected it was due to an injury as a child. He didn’t know if it was causing the imaginary smoke smell. Since being treated for MG with first steroids/mestinon for a year then cellcept and with MG well controlled, I’ve had fewer episodes of much shorter duration, eg 30 minutes. I think the last episode was very short about a year ago. This area has lots of wildfires from spring to fall and that doesn’t trigger the phantom smoke smell anymore. Whether the MG treatment is coincidental or has actually had an impact is anyone’s guess.

[Sharon Haw]

I use an Apple Watch and an iPhone. The main reason is because my MG causes me to trip and Apple Watch/iPhone have fall detection which can call for help. Downside is some Emergency Response services don’t have the technology to access the info on them yet to see I have MG so I considered getting a chain Medic Alert bracelet but I don’t like wearing bracelets (I don’t sleep with the watch). It’s also critical to keep the information up to date. Someone on this thread mentioned adding the list of MG cautionary meds in the app, which is a great idea. There are too many lists that include quite rare or minor contraindications. The MGFA list is good.

[Sharon Haw]

According to my neurologist and most lists of medications/treatments, Botox is to be avoided if one has MG. Therefore It’s not a recommended treatment for hooded eyes or other conditions.

[Sharon Haw]

Yup – lots of issues. My main issue is that my feet don’t lift evenly when I walk and my toes lag and catch on uneven surfaces, steps, parking curbs, etc. That throws me off balance. I avoid walking outdoors because of balance issues. Even on the treadmill, I have bouts of unsteadiness. My MG causes my legs and feet to tire when climbing stairs so I often have difficulty clearing the steps at the top of the stairway. Anything that requires me to lift my feet can put me off balance and at risk of a fall. I’ve fractured my ankle before and have osteoporosis so I’m high risk for breaking something if I fall.

There are things that help. My neurologist prescribed Mestinon that I self-manage as an adjunct to Cellcept when I need a boost. Every morning and the first part of every session with my personal trainer is balance exercises. I also do a dynamic warmup of my core, a Tai Chi warm up, plus I’m learning Tai Chi. I also do strength training and the standard balance exercises for seniors (calf raises, alternating reaches, stand on one leg at a time, walk forward & backward through a “ladder”, etc.). It all helps steady me and gives me the strength to recover when I do lose my balance.

[Sharon Haw]

Thanks for sharing! You’re on to something: https://pubmed.ncbi.nlm.nih.gov/1573422/ The article mentions no side effects – have you had any? Any nose bleeds?

I take Cellcept regularly but use a Mestinon tablet as needed as a quick pick up for muscle fatigue, especially with swallowing, but I get severe eye twitches from Mestinon. I’ll discuss neostigmine nasal spray as a possible alternative with my neurologist.

pubmed.ncbi.nlm.nih.gov

Efficacy of intranasal administration of neostigmine in myasthenic patients - PubMed

The efficacy of intranasally administered neostigmine was tested in 22 patients with generalized myasthenia gravis (MG). Topical therapy to the highly vascularized oropharynx proved to be quickly effective in 5-15 min both clinically and electrophysiologically. Twenty-eight MG patients were then … Continue reading

[Sharon Haw]

The biggest challenge is making firm commitments as I’m not sure I’ll be able to meet them because I’m on immune suppressants. I can’t commit to picking up my granddaughter after school once a week because she’s either got a bug (Grade 1 – she gets everything!) or I do. I also have to cancel a lot of family dinners and appointments (esp during the winter) and avoid places where lots of people gather. Despite all that, I am going to my granddaughter’s Christmas concert today even though I have a sinus infection and will be exposed to a germ bomb in an auditorium full of K-Grade 3 students, but I’ve had my shots, I’ll wear a mask and keep my fingers crossed. That said, I do resent the physical and social limitations presented by being immune suppressed. My MG is under control, the immune suppressants that keep it there are the challenge for me. The biggest challenges are the sudden infections (UTI, sinus, lung, skin) and months of slow progression of viruses because I can’t fight them off. Mestinon alone causes eye twitching so bad I can’t see to drive and my fingers and toes are crossed that another non-immune suppressant treatment is on the horizon. I take Cellcept now.

[Sharon Haw]

I have never been able to tolerate cannabis as it caused hallucinations. My neurologist told me to avoid cannabis annd alcohol and limit caffeine intake. I usually avoid alcohol but occasionally have 1 glass of high quality de-alcoholized or naturally produced wine socially which causes my face to flush. Wine that is produced using nitrites and additives causes profuse sweating so I pass when I’m unsure of contents.

[Sharon Haw]

I was diagnosed at age 63 in 2019 but an abnormally low exercise tolerance for my age and fitness level was noted in 2001 during a stress test.

I don’t think age affected my diagnosis but trauma and stress due to a severe ankle fracture in late 2018 was a big factor. In early 2019, I saw My optometrist for a drooping eyelid/double vision & was told to see my primary care physician for possible MG. My primary care physician did some preliminary tests and referred me to the rapid diagnostic neuromuscular clinic at my local university’s medical school. I was diagnosed with gMG 3 weeks later.

[Sharon Haw]

I took it for 4 months after I was first diagnosed with generalized MG in 2019. It stopped my L eyelid drooping. Monthly blood tests showed my liver enzymes were increasing plus I could barely see to drive because of my right eyelid twitching, which I was told is common. My neurologist switched me to cellcept 1000mg daily. In 2023, I was again prescribed mestinon after surgery as an addition to cellcept in case I experienced more MG symptoms because it is fast acting and has a short life. I took it a few times when I noticed symptoms returning and it nips it in the bud. I’ve noticed the eyelid twitching quickly returns if I take more than 1 short acting mestinon pill in a day or if I take it on successive days so I only take it intermittently if needed. My neurologist renews the prescription annually so I have it on hand as needed.

[Sharon Haw]

CAUTION: It’s not that easy to regain lost function after one stops prescribed treatment. The “gravis” in MG means it is a serious disease and the development of treatments has only made it more tolerable. My neurologist cautioned me strongly that going off medication may seem great at first as it may take time for deteriorating symptoms to show up and it is not so easy to regain stability once it is lost. After 3 years being symptom free while on Cellcept, my neurologist supported me in stopping medication after I had been symptom free for 3 years on Cellcept. I wanted to see if I was in true remission BUT he said I must monitor daily for the return of symptoms and immediately restart meds if any symptom showed up. 2 months later, the first symptom appeared – I couldn’t open a twist top bottle. Even though I immediately started meds again, it’s now been 2 years and I still haven’t fully returned to being symptom free. Various symptoms surface off and on.

<font face=”inherit”>As to </font>Robert-wright’s<font face=”inherit”> situation, it sounds like the 2 infusions were done around the time of taking the salts. Anecdotal evidence should be taken with a grain of salt and one person’s early success doesn’t necessary translate to others.</font>

[Sharon Haw]

I’m glad you’re okay and I’d appreciate knowing which MG guidelines you are referring to. I’ve only seen ones that say that MG patients might not get fevers while taking immune suppressants, and I’ve found that to the be case for me. I’d like to know in case I do get a fever and also to find out what else I’m missing that’s in the guidelines.

[Sharon Haw]

My grocery store carries fresh turmeric root, so I take a thin peeled slice every day or so. Fresh root tastes mild like carrots. I haven’t been doing it for long so I don’t know the effects. Turmeric is a plant and eating it fresh contributes to gut microbiome diversity. I try to get all my nutrients from food because of the minimal controls on supplement manufacturers. I track my food intake daily and don’t take supplements except Vitamin D. I live in Canada so the only way to get enough Vit. D is to supplement.

[Sharon Haw]

My neurologist insists that MG has no connection – causation or otherwise – with urinary incontinence so please share any research studies that indicate they might be related. He says that urinary incontinence is controlled by a muscle group that is not affected by MG. For me, what was very occasional light leakage dramatically worsened just before and after my MG diagnosis in 2019. I don’t think Mestinon made it worse for me but I was only on it for a few months. It has continued with Cellcept. I do pelvic floor exercises my physiotherapist gave me which help but I’ve noticed that on days when I’m really active (i.e., babysitting my granddaughter), urination increases to like 20 times/day and is difficult to control. Worst is the frequent UTIs due to being immune suppressed, which are extremely sudden, painful and progress rapidly to not being able to leave my house due to lack of control. My family doctor won’t prescribe antibiotics before an infection, even though I get them like clockwork, so I didn’t take the last 2 pills of one prescription and kept them for the next infection so I could at least start treatment immediately and slow the progression. I get UTIs 2Xyear, sometimes 3.

[Sharon Haw]

I live in Canada and I buy it in a liquor store that carries better wines. I think it’s 0.5% alcohol and it tastes like good wine. The one I buy is a local product but with the movement to drinking less, more dealcoholized products are becoming available so you may have something similar wherever you live. It’s nice to drink an occasional glass of wine with friends that doesn’t give me a flushed face or interact with my meds.

[Sharon Haw]

What is DMSO??

[Sharon Haw]

Like you, I’ve “trained” my personal trainer and physio therapist and they are onboard with my very slow incremental progress. It’s been over 5 years and they never push because they know that could trigger a setback. At my recent neurologist visit, after the muscle tests, he congratulated me for being his strongest patient. I do a warm up every morning, core & weight training 2-3x week, and walk 20-30 minutes every 2nd day. If I feel tired, I take a rest day or two or whatever I need.

[Sharon Haw]

Thanks and it’s helpful to hear that all neurologists are not on the same page. It sounds like my next step should be a referral to a urologist.