Sharon Haw
Forum Replies Created
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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.
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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.
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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.
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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>
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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.
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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.
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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.
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I just returned to exercise last month after a long illness. It’s been a hard road back despite taking a cautious approach. What is super easy one day, on another day might cause extreme fatigue afterwards or even muscle pain. I’ve built up exercise tolerance before, so I know super slow and steady is the key. <font face=”inherit” style=”font-family: inherit; font-size: inherit;”>MG News recently reported on a study that found incremental exercise can </font>build<font face=”inherit” style=”font-family: inherit; font-size: inherit;”> stamina in MG patients, which I’ve personally found to be true with time, patience and caution.</font>
<font face=”inherit”>I see both a physical therapist and a personal trainer (both 2Xwk) who take a slow, low intensity approach given my MG and tell me to listen to my body. </font>My personal trainer focuses on balance, fall prevention, strength training and weight bearing exercises, and my physiotherapist focuses on flexibility and reducing inflammation.
<font face=”inherit” style=”font-family: inherit; font-size: inherit;”>My worst MG symptom is that I trip easily so I walk on a treadmill, not outside. I’m up to 15 min cardio every second day on my treadmill 3 times/week and do a dynamic warm up and very light exercise program 10 minutes per day. I take mycophenolate (immune suppressant) so infections/viruses often set me back. Both professionals ask me what exercises the other has assigned and dial my program back on days I’m tired. </font><font face=”inherit” style=”font-family: inherit; font-size: inherit;”>I have insomnia on the days I’ve been to the gym, which means I’m exhausted the day after so we call that my recovery day off. </font>
My current goal is to build up my strength and stamina for a family trip to Disneyland and the San Diego Zoo in 5 months. The MG Foundation of America has a great free webinar on preventing fatigue – Use Your Spoons Wisely – available anytime at https://myasthenia.org/MGFA-Events-Webinars/Webinars/Wellness-Series<font face=”inherit” style=”font-family: inherit; font-size: inherit;”>.</font><font face=”inherit” style=”font-family: inherit; font-size: inherit;”> Airports are a huge challenge for me but, after listening to this webinar, I’ve decided to request transport </font>to<font face=”inherit” style=”font-family: inherit; font-size: inherit;”> the gate from now on rather than tire myself out walking across an airport at the start of my vacation. And at the park and zoo, I’ll rent a scooter/</font>ECV (Electronic Conveyance Vehicle) to prevent getting overtired from the inevitable walking and standing<font face=”inherit” style=”font-family: inherit; font-size: inherit;”>. I’ve found useful tips in travel blogs for families (e.g., the Undercover Tourist) for these and many other amusement parks. The tips to prevent kiddos from getting hot and </font>tired can also apply to MG!
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MGFA's Wellness Webinar Series aims to connect, educate, and empower MG patients, care partners, and medical professionals.
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Public Relations Director managing teams at large utility corporations and government including crisis communications, issues management, internal communications and customer communications. My brain fog, fatigue and loss of my former high energy led me to retire 3 years after diagnosis. Although my employer never asked me to leave, they did assign me to a special project with fewer demands. They were happy to see me go because I wasn’t as sharp as I used to be. MG didn’t affect my attendance but the job demanded quick insightful decisions and MG meant that peak performance was gone. Those last 3 years at work with MG were embarrassing and demoralizing. I’m still struggling to recover my lost confidence in my abilities. I’ve gathered a team to help me – psychologist, physiotherapist, personal trainer, foot care nurse, neurologist, family doctor and supportive family and friends. Recovery is slow.
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Double vision is one of the signs I regularly test for to track the state of my MG. I sit looking at a wall and then look at the corners: up to the right, then left and then down right and left. I find my bathroom is best because it’s smaller and has plenty of vertical and horizontal lines. It’s easy to see if any line is skewed or double, and that’s my signal to take mestinon. I’m on mycophenolate but my neurologist allows me to take mestinon as needed when symptoms appear.
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I’m surprised your doctor is keeping you on prednisone alone. I know things are different in Canada where I’m located but the standard protocol here, according to my neurologist, is to start treating MG aggressively in the first year, e.g., mestinon plus starting with at least 20mg daily prednisone tapered off to 0 by the end of the year. Mestinon is continued as the maintenance dose if all goes well. Mestinon caused elevated liver enzymes for me so I was switched to mycophenylate mofetil six months in. I’m not thrilled about having to take immune suppressants instead of mestinon, but I’m hopeful that with so many new treatments on the horizon, another treatment that doesn’t suppress my entire immune system will be available here soon. I guess I should be thankful there are treatment options for MG, but I do empathize with your having to continue on predinisone.
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Another response mentioned anti-maskers. I have family members that think I’m over-reacting when I wear a mask, and when they comment, I simply retort that I’m not asking them to wear a mask. I’m wearing it to protect myself because I have no immune system.
Before Covid, I never wore a mask, even when I should have, like on planes (airlines don’t change their HEPA filters often enough) because I take Cellcept (immune suppressants). The pandemic only reinforced that I should take more precautions. I found the key is to avoid high touch environments, crowds and anywhere sick people go (e.g., labs, drug stores, doctor’s offices) and if I must go, I book for a less busy time or wear a N95 or level 3 ASTM mask.
Now I avoid high-touch environments like grocery stores and enclosed, busy spaces. I get groceries and other items delivered. I wear a N95 mask on planes and airports. I usually avoid air travel and public transportation in favour of my own vehicle.
If a family member is sick, we skip Sunday dinner. If I’m sick, I stay home, run my HEPA air cleaner on high with a fresh filter and stick to my spaces (separate floor from my son who lives with me), and take precautions (mask, use wipes, etc.) if he must go through my part of the house. He has his own floor with a second large HEPA air cleaner.
Even when I’m not sick, I meet friends on outdoor patios, or when restaurants are less busy. I plan trips for first thing in the morning at places with large spaces so air exchange has been working overnight. My son goes to the drug store for me. I wear a mask in any medical facility. I wear a mask and go to a private gym that still limits the number of people in the gym and I go at the least busy time of day. I asked my physiotherapist’s office to call me to reschedule my appointment if they book a class around my regular time.
I’ve found that certain brands of Level 3 ASTM surgical masks and N95 medical masks are more breathable than others (e.g., Medpro works best for me), and some are better than the usual procedure mask that most people wear.
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I use Apple’s Health app to set reminders on my iPhone and Apple Watch. Mycophenylate comes in large pills packed in blister packs so my pharmacy can’t package it with my other pills in cellophane packets. I put the day’s mycophenolate dosage on a bathroom shelf so I can see if I actually took it as sometimes I respond to the reminder that I’ve taken the pill, then forget to actually take it!
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During the pandemic, I only shopped online and had everything delivered mostly because I’m taking immune suppressants and I find shopping exhausting. I’m a plus-sized woman so it’s always difficult to get the correct fit, so using a measuring tape and online sizing charts, and reading return and shipping policies were critical. I avoided purchasing from online stores where a trip to a germy post office was the only return option. I still found myself with a bunch of ill fitting, poor quality, out dated clothing since online options can be limited. I now shop in person at a better specialty store for plus sized women in the morning when my energy is highest, the germ load has dissipated overnight, staff have time to help me and I don’t try to do too much at one visit.
Grocery stores and pharmacies are busy, high touch environments so I haven’t stepped inside them since I started immune suppressants. My son picks up the few items that can ‘t be delivered.
I really appreciate stores that still offer curbside pick up so I don’t have to enter the store. Having to personally choose an item and returns are the biggest challenges. I usually plan to shop first thing in the morning on their least busy day and if I hear people coughing or sniffling, I put on a Level 3 ASTM surgical mask. For high germ environments like blood testing clinics, I wear an N95 mask.
Shopping malls are also a no-go, unless the store is right by an exit. Some big box stores are quite the hike to shop in and some have their return counters by the entrance/exit and some at the back of the store. I call the store if I’m not sure. I’ve learned to be more careful about what I order online in order to avoid returns.
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I was diagnosed with generalized MG in March 2019 and took Mestinon 4 X 60mg daily until Aug. 2019, and as needed only in the past year due to a return of occasional double vision and muscle failure. In 2019, muscle twitching was so bad in my right eye that at times I couldn’t see properly when driving, worse in the morning. I also had elevated liver enzymes which was attributed to Mestinon so I was switched to Cellcept. I don’t like being on immune suppressant medication and wish I could return to mestinon or another med that doesn’t compromise my immune system.
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Dry throat and nose is common for me, and paradoxically, so is an overproduction of mucus that sits in the back of my nose and throat which is difficult to swallow although I have no problem with food. I have a post-nasal drip so that doesn’t help. To keep things flowing, I use Neilmed sinus rinse twice a day (once a day I add a pulmicort nebule to it), a humidifier to maintain 35-40% humidity in my home and HEPA air cleaners (a large portable one cleans my entire one level house). I also use nasal gel or oil 2 times per day since the dryness tends to give me nosebleeds in winter. Allergy season usually triggers my asthma so I use bronchodilator and steroid inhalers (Diskus), which make the throat dryness worse. A combination inhaler of the two gave me laryngitis (the generic was way worse) so I went back to using two.
I was diagnosed in 2019 with generalized MG and am currently on 2000 mg of mycophenylate daily. My MG symptoms are fairly controlled but my neuro allows me to boost with mestinon if I notice symptoms worsening which quickly brings them back under control.
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Yes, and thank you, your post gave me an epiphany. I used to be a night owl who did her best work in the late evening and often had insomnia. In the past year, that’s reversed. I’m best in the morning, energy is tapped out by 6 pm and I’m falling asleep sitting up at 9pm. I also need a recovery day after an active day. I was following the “don’t nap” sleep hygiene routine but your post reminded me that it may not apply to those with MG. Since I no longer have trouble falling and staying asleep, I’m going to try the nap route and see if that helps me have more energy in the afternoon/evening or wake up earlier. I was diagnosed in 2019 and am currently stable on 2000mg of cellcept daily.
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I’m in Canada and I’ve had 6 Covid-19 shots, starting with the first 2 Pfizer and the next 4 boosters either Moderna and Pfizer, as soon as I was eligible (with one exception stated below). For the first 4 shots, because I was so stable, my neurologist allowed me to reduce Cellcept for 2 weeks starting 2 days before a shot. I got slightly stronger reactions from the Moderna vaccine but they were mild: a sore arm, fatigue and muscle aches.
This fall, I got boosters for Covid-19, flu and pneumonia, and the new RSV vaccine. My neurologist strongly recommends I get immunized esp. against respiratory viruses because MG affects the lung muscles. Also, I have many co-morbidities on top of MG which makes me high risk, and during the pandemic, ICUs were mostly full of high risk patients. So for me, it makes sense to be immunized.
<font face=”inherit”>Does it work? I had Covid once in August 2021 and the person I was exposed to was quite sick with it. I wasn’t, but I started Paxlovid antiviral meds on day 2 after the symptoms started. Paxlovid stopped the progression of the disease and I was mostly symptom free except for a week or so some brain oddities, like forgetting words and which way to turn the shower faucet off and weird super-salty & super-sweet tastes at </font>times<font face=”inherit”>.</font>
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I’ve noticed that any memory issues are tied to fatigue, both due to MG and amount/quality of sleep I get regularly. I recently got an Apple Watch that tracks blood oxygen levels and found my levels often dip below 90 (lowest was 78) around 1 am and 4 am. I had a sleep study 5 years ago but couldn’t tolerate the head gear and didn’t sleep. I am going back to my doctor with the new data in 2 weeks.
For those of us with smart phones and watches, I’ve found using some of the features helps me remember when I’m tired. I use them to set timers, reminders and leave voice recordings for myself.
I also set up medication reminders on my devices and I dismiss the reminder as I take my meds. My pharmacy packages my pills in pouches that have a date and time on them so I know if I’ve taken them or not. The pouches tear open easily whereas my mycophenylate is packed in bubble packs and it’s hard to push the pills out twice a day.
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I had a good optometrist and family doctor who both suspected my drooping eyelid might be MG and after the ice and blood tests, referred me to a local university’s neuromuscular clinic where I had further tests and was diagnosed. After aggressive treatment (low dose prednisone and pyridostigmine) for the first year, I was switched to mycophenylate for maintenance. Pyridostigmine is a short acting medication so my neurologist said dosage can be self-managed if a specialist allows it but other medications may not be (again, speak to your doctor). I had a negative experience reducing the dosage of mycophenylate resulting in a return of symptoms which I struggle to stabilize. My neurologist had agreed to allow the trial reduction of mycophenylate dosage but cautioned me to immediately return to the previous dose if symptoms returned. He also cautioned that it’s not always easy to return to stability on the previous dose. He was right. We started the trial and a month later, some symptoms started again so I went back to the previous dose. After a year trying to stabilize on the previous dose of mycophenylate, he prescribed pyridostigmine as an additional medication for me to take when I notice symptoms since I’m stable most of the time now on mycophenylate alone.
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I’m stable on Cellcept so my neurologist has taken a wait and see approach on the newer treatment options until my next annual checkup. With so many options in the pipeline, I’m hoping that less invasive delivery methods like oral or injection will be further developed in the meantime. I appreciate the early adopters who are trail blazing with these new treatments.
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Yes, I have, both before and after MG diagnosis. 20 yrs ago, I noticed I was out of breath (gasping) after climbing 2 flights of stairs despite being very fit at the time. It was noted during the pulmonary function and stress tests that my exercise tolerance was lower than normal for my age and fitness level – I tired earlier, but no exploration of the cause was done. The doctor just said the lower exercise tolerance was “odd” given my good fitness level. Over the years, I occasionally tripped climbing stairs and on uneven surfaces. In 2018, I fell walking on an icy sidewalk causing multiple fractures in my ankle, requiring surgery and had a slow recovery. MG was triggered 3 months later just after I returned to work. Since then, I avoid walking outside because I trip on uneven surfaces and my feet often don’t clear stairs even inside. I got a good treadmill for safe exercise and walking poles for outdoors. I had a couple of falls that led me to temporarily pull my walker out of storage. I see a personal trainer weekly for weight bearing and balance exercises. For the most part, my MG is reasonably controlled with just mycophenylate mofetil, but I was recently prescribed a small supply of mestinon to supplement as needed when I notice more symptoms.
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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.
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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.