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What is your most debilitating symptom?
What MG symptom do you have that seems to be the “worst” for you?
How do you describe what that symptom feels like to friends, family, or coworkers?
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61 Replies
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Fatigue is the most frustrating for me. I have always been energetic and now I am not
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The fatigue can be…fatiguing. And frustrating. I sleep on average 9-12 hours and some days I still need a nap. Being active like I once was is a dream. But I do find ways to be active within my new limits.
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I have severe double vision and blurred vision.and always feel like I’m walking on a boat.but I’m thankful that it’s not as bad as some others here.
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I would hate that feeling of always walking on a boat. It sounds like something my husband explains to me that he experiences after he had a TBI (traumatic brain injury). I have tinnitus (ringing in the ears) and it drives me crazy enough. ha
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My symptoms have been severe pain in my legs. Also I have shortness of breath and have a hard time walking fifty feet. I have never been a smoker. I am 75 years old and diagnosed about eight years ago. Please help!
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Hey Sammy.
I’m sorry to hear you are struggling with leg pain. While science hasn’t shown that is MG related, I believe that it is secondary to muscular weakness. I actually have an article being published about it… tomorrow I think.
I also have the breathing difficulties. I know that the environment, my physical activity, and my heart rate all contribute to my shortness of breath. I’m going to link a few columns and articles on these subjects and hopefully you’ll find something that resonates <3 Please keep looking and posting in the forums for support as you work towards better symptom management.
https://myastheniagravisnews.com/columns/accepting-long-covid-19-diagnosis/
https://myastheniagravisnews.com/columns/how-quicksand-elephants-sirens-relate-living-mg/
https://myastheniagravisnews.com/columns/summer-tricks-tame-myasthenia-gravis-heat-intolerance/
https://myastheniagravisnews.com/columns/4-environmental-considerations-i-keep-mind-mg/
myastheniagravisnews.com
Accepting a Long COVID-19 Diagnosis – Myasthenia Gravis News
Columnist Shawna Barnes thought she was recovering from COVID-19 a month ago. Now she's been diagnosed with asthma and long COVID-19.
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Fatigue used to be my main issue. On a blog someone mentioned using modafinil. I looked it up. It is prescribed for narcolepsy and truck drivers, people who work midnight shifts etc. my doctor agreed to let me try it. Well it has been nothing short of a miracle for me. Initially took 100 mg in the morning. But that only took me to late afternoon. So now I take 100mg in the morning, then at noon I break one in half, then take another half at 3. Most days I make it to bedtime sometimes just needing to rest my eyes and legs for 20 minutes in afternoon. It is a controlled drug, brand name Provigil. The worst side effects I experience is being able to now sleep soundly at night. I am 71. I also take vyvgart, prednisone and mestinon. I have some weeks I feel like I am 50. Then I overdo and it takes me a few days to recover. It seems it is always a balancing act, but I am better than I was we years ago. Dx’d in 2020, symptoms began in 2013. It is definitely a life changing disease but being proactive one can manage it. Happy new year all.
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Happy New Year to you too Theresa and all. Thanks for sharing the info on this medication. My main symptom besides the fatigue, is major leg weakness. Feeling like dragging lead instead of my legs carrying me and not balanced or in control of my movement. I’ll ask the neuro about this medication and hope it energizes me!
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Renna, it’s been a little while since we’ve seen you around the forums, and I just wanted to send a gentle check-in your way. Hoping this past year has given you a few steady stretches, and wishing you warmth and ease as we move through the season. -Jodi, Patient Advocate
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How interesting Theresa! I’ve never heard of that med/supplement. I may have to look into it just for curiosity’s sake.
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Currently, and for about a year now, my worst symptoms are with chewing, swallowing and speaking. I’m always done chewing before I’m finished eating, and I slur and drool occasionally. Although generalized muscle weakness persists in varying degrees, my overall ADL scores are as low as they’ve ever been.
Certainly my symptoms have fluctuated since onset, but they’ve always impacted my eating and speaking in some way.
I often describe to others that having generalized muscle weakness feels like I just completed a workout; or that I’m not tired I just feel “spent”; or I feel like I’ve got voltage but not enough current…
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I’m right there with ya Robert.
I’ve had to alter my eating habits and my diet because of the bulbar symptoms affecting my ability to eat. I rarely eat steak. I can’t chew gum anymore. I know if I’m feeling weak-ish, I need to have a mechanically soft diet – mashed potatoes/sweet potatoes with lots of gravy or butter for example. Then my husband cuts up or blends the protein so it’s uber small and I can mix that in with the potatoes so I get a full meal in. When it’s been really bad we’ve had to put the whole meal in a blender and make a soup… Not my favorite way to eat to be honest. ha
Have you tried anything like that or altered how you eat as a result of the struggles with chewing?
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Prior to my 2016 diagnosis, I even pursued dental answers for the chewing and swallowing issues…
And it was only in afterthought that I link those to MG. And knowledge I’ve gained here on this site from you folks.
But I can handle most meals if I keep it smaller (half portions?), and I do spend alot more time planning, preparing and proportioning meals for easier chewing and swallowing.
I’m fortunate in that I’ve only thought about what I’d do if and when it got worse; so far I’ve avoided a blender. Only once, a little more than a year ago, was I on a puree diet (in crisis); I keep my knives sharp and my veges soft.
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I’m so glad you find this site and the forums helpful!
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My brain ( & stress). I used to lead a Bluegrass music group. That required loading the sound equipment, driving to the gig, setting up the sound equipment (lots of wires) which took about two hours. Then I was supposed to remember the lyrics, cue to other musicians, and sing for two hours. Then I had to pack the equipment, ride home, store the equipment, another two hours. Most of the gigs occurred during our “magic hours” of 4pm to 7pm. I just couldn’t hack it any more even though my vision had improved, I could chew, swallow, etc.
I still lead jams for fun, but I only have to show up, play, and go home.
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I am glad you are still able to participate in the Bluegrass events. I have to remind myself on a regular basis that I can still do the things I enjoy, it just might look a little different than “before” I got sick. But that’s okay.
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Currently my most debilitating symptom is my weak neck and shoulder muscles. It seems to be affecting only my right side and there was no pain at the beginning but now the pain is there 24/7 and it seems there is no position to lay or even sit up and hold my head comfortably. I know pain is secondary and not a primary symptom of MG but I think it is caused by the constant, though unconscious, effort to sit and stand straight and hold my head up. When it started it seems like my head was being drawn down and to the side and now it seems like I control it better but the price is constant muscle strain and pain. Does anyone else have this issue?
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I am lucky in that I don’t have weakness or pain in my neck, but I do in my hips and legs. That is where my primary weakness is. And you are correct, the pain is secondary from the non affected muscles compensating for the ones affected by MG. One of the ways I combat this, is by doing modified strength training to help build up the muscles that get weak so it takes longer to get weak.
My husband is a personal trainer and we use me as a guinea pig to try out different things to help folks in our situation. I write a column for MG News as well as moderate the forums. I’m going to share a few article links that I think you might find helpful.
https://myastheniagravisnews.com/columns/exploring-connection-myasthenia-gravis-pain/
https://myastheniagravisnews.com/columns/new-workout-plan-reminding-take-messy-action/
myastheniagravisnews.com
Exploring the connection between myasthenia gravis and pain
Although pain isn't considered a symptom of myasthenia gravis, many patients report it. Columnist Shawna Barnes sets the record straight.
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Double vision.
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Paul, my symptoms appeared slowly; a slightly drooping left eyelid, occasional unexplainable fatigue, achy neck, etc. Then one day double vision clicked in and didn’t leave for 18 months. I had not yet been diagnosed. A couple of things helped with the double vision. One was that although I could never properly wink I now could just let that left eyelid stay down and watch tv, read, or do things around the house without having to deal with the double images. The second thing was that I tried to figure out how to go out with double vision without everyone staring at me – very dark sun glasses helped though I still had double vision – then I had the idea to tape a piece of paper over the left lens on the inside….voila, single vision. I hit on that only because I could not tolerate an eye patch, which is actually a simpler solution. I hope you can find what works with you. My double vision was sometimes intermittent. I don’t know how long you have been struggling with it and I hope that you will find an aid that works with you. Eventually I was diagnosed with MuSK MG and was able to get Rituxan infusions which eliminated the double vision quickly. I am now at a point of minimal manifestation, near remission but some minor symptoms daily. Currently I have a neck problem but I am not certain it is due to MG.
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My double vision disappeared!
It had been one of my worst symptoms for 3 years. I’d been on IVIG (privigen) and P tabs since diagnosis.
After suspending IVIG for 18 months then going into crisis, I resumed IVIG using Gammogard, and no more double vision.
I don’t know how else to explain this, perhaps in my case the improvement in double vision seems common to the IG.
Good luck.
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So wonderful to read this! Each different brand of IVIG has a different ratio of the antibodies (IgA, IgG, etc). So it could be that the one you’re on now had the “special sauce” to treat your specific needs. I was getting Gammunex and now I get Privigen. Privigen works better for me.
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Yep! All that and eye pain. I feel my eyes being strained, I have to read with 1 eye. Good luck with your MG treatments.
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Helped my wife hand a few small pictures on the wall, it was a horrible job. My dizzness, double vision, ballance, coordination, felt like my head was going to expelode and I was an ironworker working on tall buildings. MG is hell.
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My MG is because of Agent Orange.
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I’m so sorry to hear that, Paul. I know that Agent Orange has caused a lot of ills but I didn’t know about its connection with MG. My MG was precipitated by statins.
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Explaine “statins” ?
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Medicine given for cholesterol.
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Hey Paul. My care team believes mine is due to the open burn pits in Iraq. Something exposure related for sure that triggered the autoimmune response.
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Jet fuel also….
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Yep., go to war for your Country and get poisoned!
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Vision.
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Mine is the ability to walk normal. I stumble and limp when I walk and my gait is uneven. Still debating with neurologist if it is MG or muscle loss from the 3 month hospital end of 2023. Doing a new round of pt now.
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I hope the PT helps! Even if the uneven gait is from MG, if you have a knowledgeable PT, it will help either way.
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My worst symptom is chewing and swallowing! At times I can’t swallow liquids, so I don’t even think about eating. Had to have a feeding tube put in for nutrition and liquids. This is all new to me having been diagnosed in early November of last year. I’m taking pyridostigmine 60 mg three times a day and start IVIG infusions next week. 🤞
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Goodness! I struggle with chewing and swallowing as well. I’ve not had to get a feeding tube yet. The worst it’s gotten for me is having to blend meals to a smoothie consistency.
Good luck with IVIG! I’ve written a couple of articles over at my column, The Whispered Roar, on how IVIG has been an amazing addition to my treatment regimen. The latest one explains how it works. Give it a gander if you want to learn more about the science behind it in not to techy/science-y terminology 😀
https://myastheniagravisnews.com/columns/how-ivig-helps-me-myasthenia-gravis/
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The infusions have helped greatly in my swallowing! It took about 2-1/2 day for me to really notice the improvement. I have notice a rash on my face and shoulders but not to bad. The improvement is a blessing and hope it continues and until the next infusion in 4 weeks from the 20th.
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I’m so glad to see that they’ve helped. Swallowing and the bulbar symptoms can be some of the more frustrating symptoms for me.
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Vision, weakness, energy..
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Hey there Paul. Do you give yourself the grace and the permission to rest when you need it to help with the lack of energy?
I’ve also found that I tend to be extra low energy when I’m not getting enough Vitamin D or Iron in my diet. After my infusions I almost always crave red meat. My care team and I think it’s because my body is wanting the iron.
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EVERY afternoon for 2 hours.
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For me it’s fatigue, which will bring on not being able to hold my head up, and swallowing and breathing issues. I walk slowly anyway due to severe osteoporosis which helps to conserve strength and get through the day. I usually crash about 2-4pm and take another dose of Pyridostigmine to make it to my 7pm dose. I also do a lot of standing and some stretching exercises while holding onto something, and as many chores sitting as I can. I drink fortified almond milk with collagen protein powder 3x a day and a lot of plant based proteins, vegetables and supplements. It’s hard chewing meats but I try to make the effort each day. So far I’ve been fairly stable on 60mg 3x a day but I’m feeling more tired and weak as I’ve lost 20 lbs on my very small frame in a year. Always seeking another way to fortify my nutrition.
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I’m here for my 69 year old husband that has the disease. He’s terrified because in all the 23 years we’ve been together, he never once went to a doctor and had never had blood drawn. He’s terrified of needles and turns white just talking about them. About three months ago his eyes started drooping very low. I had no clue what to do so I took him to eye/ear/throat specialist. Luckily the doctor was familiar with MG and had him get an Xray of chest and had blood drawn that did test positive for the antibodies. He said the Thymus looked normal but they he wasn’t an expert on MG. I called around our area for a specialist and couldn’t get an appoint until 3/27. So in the meantime, here we still wait to see the Nero specialist. My husband has now lost 44 lbs. because he can’t swallow 95% of the time and then he has the breathing issue as well about every other day. So far he’s been able to get thru it in about 2 minutes or so, but haven’t had to take him to ER yet. I’ve read everything I can get my hands on about the disease and the forums online have been very helpful. Thanks so much for this forum as I’m at a loss of what to do to help him.
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Welcome Hemby. I’m glad you are finding the forums helpful.
Losing 44 pounds that quickly is dangerous and you should watch out for malnutrition. I lost 10 pounds in a week because I couldn’t swallow without aspirating my food. Try blended foods, smoothies, etc. Make it at a consistency that seems to be best for your husband so he doesn’t choke on it. Not being able to eat can be considered a medical emergency and puts additional stress on the body. MG doesn’t like stress.
How did the appointment with the neurologist go last month?
-Shawna
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This is for hemby. Maybe find a teaching medical college to get your husband treated. A trip to the ER might speed things along.
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Thank God, his appoint is in 7 days with the Nero doctor. If he gets any worse, yes I’ll call 911, but so far he’s been able to get over a “spell” in two minutes or less. He is terrified of hospitals and the ones close to us are not run professionally. There’s not enough doctors, they have PAs doing most of everything that I’ve seen lately and wait times are crazy. No offence to the PAs, but some patients need experienced specialists, especially for issues like MG.
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The night time severe cramps in my calfs is annoying especially when I have to get up and stretch my legs to make it stop. But, that’s an aggregation. The fatigue is more than an aggravation. It’s making life harder on an everyday basis. But the worst, and it’s getting worse rapidly, is the weakening of the muscles that control the diaphragm. It’s becoming harder and harder to breathe. Now I see why this symptom is the one that kills MG sufferers. It’s killing me I believe.
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I was paralyzed couldn’t move my body nurses had to move and wash Me while in hospital- I couldn’t talk without slurring until I got 10 treatments and mestinon of plasma exchange .took months to be able to feed myself or wash myself.
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Gaylee your journey sounds similar to mine. I spent 3 months like that. Plasma exchange did it for me. Been out 14 months still having trouble walking.
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Fatigue for sure.
Second to that is swallowing. I have to be sure to be very careful with rice.
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Fatigue seems to be the one symptom almost everyone here can relate to. And swallowing on top of that is no small thing to deal with physically and emotionally. Do you have go-to meals or foods that feel safest and easiest on tough days? -Jodi, Patient Advocate
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Mine started with weakness and drooling when I ate and then started to affect swallowing. I had slightly droopy eyes for some time but didn’t pay much attention since it didn’t cause problem with my contact lenses. Neurologist finally tested me for mg and put me on Mestinon. The eating problems disappeared in 2 days but started having bad double vision so she added Prednisone which fixed that. Just waiting for what comes next and hoe there’s a fix for it
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That must have been a stressful start, especially with symptoms shifting from drooping eyes to swallowing issues so quickly. Anticipating the future can feel like the most challenging part. How are things going for you now? Have your symptoms calmed down with the treatment? -Jodi, Patient Advocates
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Sorry I’m so long getting back to you. I’m not quite used to this site yet.
So far, so good. The prednisone is at 30 and being cut to 20 in a few days. Currently I only have that ‘walking on a ship’ feeling at the end of the day, but I do PT for balance every day that seems to help.
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First of all this fatigue that seems to mildew my whole life and secondly the loss of mobility caused by portentous concurrence of orthopedic problems and muscle weakness.
My lack of mobility is quite obvious once I show up with a rollator. With respect to fatigue the mildew picture describes fairly well the constraining of my former spontaneity and enthusiasm.
I would also describe this feeling of helplessness as you never know what your strength or energy level is going to be like. Just imagine -I would tell my friends – living in this kind of uncertainty.
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Wow! I feel like I’m reading my own diary. Most of the symptoms people have mentioned I’ve now experienced over the last 4 years. Looking back many were just a nuisance that would cause me to learn a new “normal”. Anyone having mg knows there is nothing “normal ” about it.
Narrowing the symptoms down, the most debilitating is loss of swallow. I was able to modify speech and chew, but when you aspirated on your own saliva, it was time to be hospitalized. The second lifestyle changing, debilitating symptom is fatigue. My brain thinks my body “can do”, but the body says it’s a ” no go” that day.
Sometimes I get the feeling my symptoms are a sanity test. They say what doesn’t break you makes you stronger- right?
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Nora, I’m fortunate to be doing much better than years ago. I still have symptoms but at this time they remain minor. Rituxan infusions helped me immensely and I take no meds or treatments for my MuSK positive MG now. Still the bothersome thing is that I never know what symptom will crop up and it can be different from day to day.
I have heard that what doesn’t break (or kill) you makes you stronger but I have my own take on that saying. What doesn’t break of kill you just doesn’t break or kill you. It is up to you to get stronger or give in to it. Keep fighting!
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Blurred vision is the worst symptom – worst in the late afternoon and evening. Next is long recovery after long bike rides. Legs stay sore for 24-26 hours
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Blurred vision can really disrupt a day. It’s impressive that you’re still going out on long bike rides, even though you know the recovery can be tough afterward. How often do you go biking? Do you find that it provides enough joy and freedom to make it worth pushing through the soreness? -Jodi, Patient, Advocate
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Not being able to hold my head up when I stand or walk. Braces aren’t helpful; my neck hurts all the time.
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I can relate to this. I find relief from massaging with muscle rubs or lotions that contain peppermint, arnica, calendula, or eucalyptus. The more of these ingredients combined in one product, the better. -Jodi, Patient Advocate
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