Sharon Haw
Forum Replies Created
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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/
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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
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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.
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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!
myasthenia.org
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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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.
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What is DMSO??
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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.