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Your Myasthenia gravis symptom that responds least to treatment
What Myasthenia gravis symptom do you have that is the most difficult to control with treatment? Was there ever a point in time that this symptom was managed or improved?
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55 Replies
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My symptom that is only partly controlled is my double vision. I have double vision if I look at something off axis. I also have double vision if I have my head down and look up with only my eyes. If I look directly my vision is fine. None of my treatments have stopped this. If that is the worst I have I can live with it.
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My symptoms are pretty much as yours . I’ve wondered if mine were unique. Apparently they are not. In the beginning,” about 5 years ago “ my sight was blurry . After mestinon and IVIG my straight forward vision is perfect . If I roll my eyes in any direction I get blurry or double.
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Exactly the same here but add ptosis, mostly in one eye!
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i have double vision since i was diagnosed ad started to take mestinon, steroids, and latest immunosuppressants, but remember the occasion that i for the first time saw only one drain at the bottom of the sink, and only one tv, not 2 above each-other, but i still do not like turning, and once i saw all behind thick smoke – which was not there. when i try to look different directions, i have blurred or doube vision.
i am “only” 64, do you think i will drive again?
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My symptoms are the same as yours. No matter what, I will see double when I look to my side, look up with just my eyes. My eyelids sort of jump on mestinon. I started with ocular MG and it hasn’t improved all that much! Vyvgart and Cellcept have helped my other symptoms.
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I have the same issue with my eyes, and in addition I have drooping of my left eyelid. Fatigue is also a major problem for me, as well as brain fog that is worse at some times more than others. For these reasons, I stopped driving (and working) two years ago at age 67.
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The same as you. Ptosis mainly in my left eye. It’s unresolved when I go to bed. Also when I move my head to extremes to shave for example my left eye closes. The fatigue and swallowing remain unresponsive to treatment (steroids, mycophenolate and mestinon) as does the breathlessness and extreme sweating that comes with fatigue. This is the most limiting part of the disease for me.
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I also can’t seem to find anything to help my blurred and double vision.now on ivig but that doesn’t work either
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My eyes – the lids don’t close but they flicker/ dr says not mg but never had it until mg dx
Also nasal speech has gotten worse not better
On my 5th round of Vyvgart
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Sounds pretty classic MG symptoms to me. Generalised not Ocular though!
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Mestinon seems to help all my symptoms when they decide to appear.
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My fatigue and ocular symptoms seem to be ongoing despite mestonin and several unsuccessful attempts at IVIG. I have my fingers crossed that I am approved for Ultimoris infusions & pray that these infusions will help me.
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good luck!
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Ultomirus does help..dr put me on that instead of Soliris. Keeps me stable other than the double vision. Learn to live with it 🤷🏻♂️
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It is hard to decide. Weakness or double vision. I guess I would put ocular problems on the top because they cause weakness if I push my eyes too hard. And the double-vision is present all the time. I feel that I am looking cross-eyed at everything and can only get relief when I block out one eye. The weakness hits when I am least prepared for it.
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I have always had Optical problems; water in both eyes, both eyes weak, having to rest them many times a day, but no eye lid drop so far.
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Dysarthria and fatigue! Did not have speech problems for about 2 years after original diagnosis and MG crisis and 1 1/2 years of IVIG. Has seriously returned while on Vyvgart for over a year. Will transition in December, hopefully, to Rituximab. Anyone out there on this?
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I would be interested to know how you do if you go on Rituximab. A previous neurologist that I had suggested that I give it a try a number of years ago, but after the trouble I had with insurance getting on IVIG, I was afraid to get off of it. This was back before the newer MG drugs had hit the market.
I’ve had gMG for 9 1/2 years and been on IVIG and Mestinon the entire time. Fatigue is my biggest issue, but the IVIG infusions help a great deal.
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I’m glad this has been brought up for a couple reasons. I think it good we all learn that few of us are ever relieved of all symptoms. That would be remission. Lucky those that get it.’
I too am on vyvgart. Cycle 11. My eyes, double blurred vision and droopy eyelid never stop. My neuro shared many have this issue. I did have 10 days a couple months ago where all my symptoms were gone. It was amazing. Not since. In fact I don’t seem as good on treatments today as I did at 6,7,8 months. I also am on 7 mg prednisone and mestinon. I really have to support with the mestinon. The weakness has been real bad recently. I also wonder those of you on Vyvgart and other treatments. Does it seem to you that your symptoms vary ? I feel like they rotate and one day/week/month maybe it’s bad weakness and fatigue, then others it is my breathing, then others it’s eyes. I was nearly blind in one eye for 5 days. It’s all so weird. They vacillate a lot. Just curious if others experience this?
I was offered Rysstigo but it has the possible side effect of meningitis which scares me. It apparently suppresses 80% of the antibody versus 60% with vyvgart.
Any of you have continued good results with vyvgart?
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Mine is my jaw weakness. It responds but is short lived.
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My vision is getting worse. I take azathioprine 1 time daily 3 1/2and pyridostigmine 2 3x daily
Visions are blurry and eyes water
Speech is like a drunken sailor
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my symptoms ranked as to frequency and severity are, speech degradation, swallowing, tired eyelids (especially the right eye), fatigue, sleep issues, gait, attitude changes, falling
I finally got my neuro to double mestinon to 60mg 2x day after pressing her for 2 years, and she said if it didn’t help enough she would go 3x a day. I’m seeing a new neuro this month to see what she has to offer. I take other meds for Parkinson’s, seizures, headaches and neuropathy, and she’s always said they address gMG too. Admittedly, my symptoms have increased slowly since I’ve been on the mestinon, so I’ve been patient, but the speaking and swallowing have become more intolerant lately so I’m pressing for more assistance. I’m losing my patience with this disease treatment. When I was younger I had steroid treatments and it seemed to frequently go into remission, although I ended up with severe osteoporosis, but this is getting intolerable with the swallowing issues
I just had barium swallow tests which came up abnormal so my GI dr is doing an endoscopy to see if there’s anything physical before they decide to do some other meds. Three doctors said I need speech therapy regardless. I used to be very articulate, a singer, teacher and did seminars, as well as drove for a living as an auditor, then had to “retire” at 55 despite being at the top of my game professionally, so it’s really abhorrent what this disease and PD has done to me. Thanks for listening
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As I reach tiring points throughout each day I will experience diplopia and dysarthria regardless of where I am in a treatment cycle. They are almost like old friends after managing MG for 7 years. But the one symptom that continues almost unrelenting in my 7th year is chewing and swallowing fatigue. As others in this stream have commented I have had swallowing studies to confirm that my swallowing is quite disregulated and so far we haven’t found an answer. The choking and coughing makes we weaker which the exacerbates other symptoms. It has also caused 2 aspiration pneumonia episodes this year. So, yeah, swallowing is always hard.
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Swallowing , smiling. Speech and eye fatigue. I have mg for more than 50 years and currently take no meds although I have symptoms. The last two neuros seen says these are leftovers and I am probably stuck with them. My right side face also drops.. I don’t even know if meds can help at this point.. I do have mestinon but I don’t see any difference..
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I was diagnosed in 2022 I slipped out of bed and was paralyzed and couldn’t yell for help! Thank God my daughter found me I was diagnosed in 2008 had the antibodies but Never had a symptom until 2022 I had thymona removed was cancerous . So when this happen I didn’t know wat was happening to me. I had 10 treatments of plasma aphersis it help but took months to be able to shower- feed myself or even talk without slurring.I had double vision while in hospital 16 days. And once needed to wear an eye patch. I did have breathing problems 1 yr later but now finding out I had fluid around my heart so don’t no if that was the mg. I’m doing ok now I’m on prednisone which now I have a fractured vertebrate probably from steroids. Trying to get now. Need to take insulin also. I never had sugar problems hopefully I can stop steroids . With this mg no one really knows what’s next!
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Fatigue and Muscle weakness is my issue. I am 67 and off all meds . Told that nothing works for these symptoms. These are minor issues for many but it is my major issue. Excited by new sun cutaneous man injections but wonder if I will ever qualify for these expensive drugs ? Love to try . 😊
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This reply is to Tina and to Theresa’s. I find it very disturbing that in both of your cases your neurologist is not more aggressive with the best anon. Mestinon works. It can be taken as much as 12 times a day. They side effects being diarrhea. If you take more than 12 or even approaching 12 you may get a paradoxical reaction where your myasthenia gets worse but certainly you can increase your medicine on quite a bit. Taking 7 mg of prednisone is simply not enough in your case you need to increase your prednisone.. I hope this is helpful.
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Double vision. My double vision is quite high and low and is not significant in daily activities (driving, watching TV and reading), but it is there always. My MG started with drooping left eye lid and seem to have ended with double vision (left eye is cause). I participated in a Descartes-08 drug trial the last year and am glad to say it seems to have cured my MG (except for double vision). All other symptoms seem to be completely gone – at least for now. Mainly Mg had destroyed most every muscle in my body. Breathing was difficult as was lifting anything or doing any work. I could function, but just barely and I was getting worse by the day – the future did not look good. I volunteered for the Descartes-08 trial instead of taking Vyvgard (which was approved for me and I had applied and was accepted for complete financial coverage. I completed the last of six infusions (my own RNA modified T cells) last September (2022) and had immediate relief from MG symptoms (except double vision). My muscles are still improving each day and am back to about 75% of original strength (my MG started in mid 2019 at age 78-79). I had six stents installed in my heart late September 2022 to correct 5 blocked arteries. In two weeks I am scheduled for Hernia surgery which I think is from left over weak muscles in my groin from the 3 years of MG.
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My symptom that responds the least is occasionally tripping over my big feet due to not being able to lift them enough to clear obstacles or stairs. This happens most often on longer walks (so I mostly walk on a treadmill for cardio exercise or with walking poles) and long flights of stairs but also at unexpected times, like the other day when I didn’t clear the threshold exiting the shower and fell. I have osteoporosis so falling is a huge risk. I’m on 2000mg of mycophenylate mofetil daily and otherwise symptom-free. I’m a 68 yr old woman, 5’4″ with size 11 feet – I call them my Hobbit feet.
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Having been diagnosed with MG for over two years now at the age of 63… Respiratory and fatigue don’t seem to respond to Vyvgart like I would hope. I am taking vitamins to support the Fatigue but respiratory has worsened over the last two years. I have changed eye glass prescriptions 7 times this year as it continues to rapidly fail in the right eye and some in the left eye. Been to several optometrist and all relate it to possible MG related symptoms as they checked me for everything else. Lastly, I must say that my Vyvgart works great for everything else as I have all the MG symptoms but it does begin to run down at 45 days in my 50 day cycle and the swallowing, eye flickering and fatigue start setting back in around 45 days. My neurologist says several others are experiencing the same cycle issues but at the high expense of Vyvgart the insurance companies are pushing back on more frequent infusion cycles…
Hope that helps…
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I’m 68 and have had MG for over three years following a thymectomy for a thymoma. I am on round 7 of Vyvgart, have had two rounds of Rituxan every six months, and take Mestinon daily. The two symptoms that do not improve are constant double vision, and thigh muscle weakness which affects my gait. I have previously done IVIG, prednisone, Imuran, Cellcept.
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Thanks for all of member comments. It’s helpful. I have trouble with double vision, swallowing and walking without falling due to dizziness, tired muscles. Muscle Fatigue, stress and hot humid weather increase my symptoms. I cannot use steroids as I have a clotting disorder discovered after treatment of mg with cortisone.
I am in agreement with many here, MG specialist closer to home is needed, my ophthalmologist discovered my MG in 2015, he said it is is quite common that his specialty is one to make the discovery. The physicians I saw felt I’d had MG for years but it had been overlooked.
Thanks again for sharing your experiences, we have much in common.
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Did dizziness bother you? TIA
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Double vision, left eye drooping. I am 68, have had gMG for around 30 years, diagnosed in 2007. I take Mestinon, 75 mg every 3 hours while I’m awake. I see normal only if I look straight ahead or down. I have not tried other treatments due to possible side effects.
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63 years old on Vyvgart and a hand full of MG related pills and continue struggling with blurred vision and respiratory short of breath issues. Had MG for 2+ years now… Take oxygen as needed and on 7th pair of eye glass prescription this year. Eyes we’re both excellent before MG and respiratory was normal..
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Definitely the double vision. Many times have to tilt my head a certain way or just close an eye for a moment to see properly. Up close it’s not as bad but from 15 fr and beyond it’s double. I will say it does vary day to day. From slightly to extreme. .
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Without a doubt my ocular symptoms. Double vision and pitosis. For several months now I’ve had suture Band-Aids holding my eyes open. Even my driver’s license picture has them. Hahaha. In spite of having mestonin, prednisone, vyvgart and rituxamab the longest stretch of normal I experienced was 4 days. For that I lost my sense of taste for about 4 months. Nothing like eating everything that tastes like metal. I have opted for no more infusions and I am in the process of weaning off of the prednisone. I have not taken mestonin for quite a while. My ophthalmologist is going to do surgery to attach a small strap of muscle from my forehead to my eyelid. Probably won’t look to normal but I won’t have to slap Band-Aids on my face everyday.
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