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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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36 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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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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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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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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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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