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Flare-Ups
I’ve had a few flare-ups of MG throughout the years. Most of my flare-ups involve weakness in my left eye and mouth. Luckily, Mestinon is a big help when they happen.
What is a typical flare-up like for you? How do you deal with it? How often do they occur? Are they triggered by certain things?
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43 Replies
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I am new to the forums. I was relatively ok for 6 years after thymectomy. Still had sensitivety in my eyes but I was ok. Then dubbelvision again and suddenly weakness too. One thing that I now experience is exhaustion. I would sweep the floor and suddenly can’t breath. It is utterly rediculous. I fell the other day and could not get to my feet. My leggs just wouldn’t work. I suppose you could call this a flare up? I have so many questions. I would like to share my uncertainties.
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Rina,
I have the same symptoms as you. It started with double vision which I have permanently now. My glasses have to be fitted with prisms. Weakness in my arms and legs it a daily battle. I try to get as much done at work in the early part of the day since the afternoons are tricky. Also the extreme fatigue I experience interferes with my job and I have to be careful since I have fallen asleep at work several times. I cannot bend over to help with our dogs any more since if I end up sitting on the floor my legs & arms are too weak to pull me up off the floor and I am too big for anyone to help me.
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Ronald… what medicine therapies are you on? How much have they helped you since diagnosis?
Sorry for all your pain and discomfort. Sounds like every day is a real struggle. I am blessed with mostly good days now. My rough days come when I ‘cheat’ or ignore the triggers.
All the best to you & yours.
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Tim,
I am on Mestinon 4 times a day, 30mg of Prendisone, 1500mg of Cellcept and 2000mg of IVIG over 2 days every 4 weeks.
I am not sure how much the pills help but I do feel much better after the IVIG and that is coming up this weekend.What do you mean by “cheat” or ignoring triggers?
Even though I have had MG for many years I feel as if I don’t really know that much about it. -
Hey Ronald… Your regimen similar to mine, except no prednisone for me. BTW… IVIG is a big boost for me, too. I don’t like the chair – 2 days every 3 weeks for me, but I can really tell the difference afterward.
Sorry for confusion – by ‘cheating symptoms’, I meant that I sometimes go out in hot sun when I know better hoping for a good result (rarely get one) or I sometimes press on when symptoms appear and I should back off a little. For me, it’s my speech that gets hit first. My voice wears out after 30-40 minutes… and public speaking is a main function of my job (I’m a pastor)
I think we’re all learning about MG. I’m only one year in since diagnosis – but, I had many weeks last fall to do little else than research what was happening to me, and how I can best face it.
‘Day by day with a lot of forbearance and prayer. This forum is also a great place to learn from others. Glad to see you on here.
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Welcome RINA… This is a great place for sharing uncertainties, challenges & victories.
In my recent flare-up (my first since diagnosed 1 yr ago) increased Mestinon & an IVIG treatment brought me back to strength. My problem came, I believe, from over-exerting myself in the hot summer sun, along with some dehydration. ‘Learning day by day how to manage MG.
A good and accessible neurologist is key to quick recovery from flare-ups. They can provide context and real help. Stay in touch with them. I give mine progress reports from time to time and always get good feedback and encouragement.
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live in sunny South Africa in a little province called Limpopo. Winter is over now and the heat is terrible. I now experience that the heat and humidity is having a huge impact on my life. I am weaker and sleepy vety early in the day.
<div dir=”auto”>Our cold swimming pool will be usable now and that will definately help. Last year before my MG flared again I swam 20 lengths a day. Now I hope that I will be able to do atleast 5.</div>
<div dir=”auto”>The magnet is still doing it for me. I now travel with it wherever I go. I would not be able to sleep without it.</div>
<div dir=”auto”>My neck bothers me a lot but my husband gives me a message before I go to bed and that helps a lot.</div>
<div dir=”auto”>Mestinon keeps my eyes from dubbelvision and that really helps.</div>
<div dir=”auto”>One of my friends today said:Rina I just can’t believe that you are the same person as a year ago. You were the one with the energy. You kept us going and now you are just a shadow of that person.</div>
<div dir=”auto”>I am only glad that there are people that know what I am talking about when I experience all these crippling symptoms.</div>
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I sometimes don’t know what is a “flare”, which I interpret as a more prolonged period of MG symptoms or what is the unpredictability of an “MG day”. So, in many ways, I am still learning about how to respond to physical, mental, and emotional triggers. But I will say I often notice a predictable “lag” 1/2 way through the day for me. I seem to “hit a wall” around noon or 1 or 2 PM and it is helped by just resting for even 30-60 minutes or so. I also can have very unexpected “dips” throughout the day of extreme fatigue, sometimes making planning difficult (like long distance driving by myself). These are things that are changing in my life that take more calculation to understand and mental capacity to plan for and be safe. But they are doable and it is so helpful to understand them more and even take medication (mestinon) to accommodate symptoms.
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Thanks for the welcome Tim. I remember that my leg pains started just before I was diagnosed. Now I suffer from legcramps. I don’t know if this is the same for others with MG.
I was lucky though. One of our friends, he passed away since, came around one morning after I had a desperately crampy night and held out his hand. In it lay a magnet. You know, round with a hole in the midde? Apparently these are used in Microwave ovens! He said it helped and since he kept that in his bed his cramps had abated. He is not a MG si I thought I’d try it. I promise you ni more cramps…. narra! My toes used to start playing piano and still do but the moment I get into bed with my magnet…. my friends think this is soooo funny…. my toes calm down immediately.
Just a little advice that might help one of you or a family member.
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Recently I had trouble swallowing. My neurologist kept saying it wasn’t related to MG because of way it was presenting. It went on for quite some time until it was found I had an infection under a root canal that had put a hole in my sinus and toxins were dripping down my throat. Sometimes we have to be careful not to be too narrow focused that everything is MG flare because we can miss other issues. I ended up in ER getting IV antibiotics.
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Hi! Tim, I also suffer terrible cramps in toes, ankles and lower shins. I will certainly give the magnet a try. At the moment I take QuinineSulphate tablets but in severe bouts they do not work. My really severe cramp attacks take effect after I have been on a fairly long walk.
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Hi! Tim, I also suffer terrible cramps in toes, ankles and lower shins. I will certainly give the magnet a try. At the moment I take QuinineSulphate tablets but in severe bouts they do not work. My really severe cramp attacks take effect after I have been on a fairly long walk.
Hilda Edwards
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Wow! Amy, what a good reminder. I hope you’re feeling better.
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Thank you. It took a long time to get over that ordeal. I had to have my sinus surgically repaired and my mouth drooped for a few months. I’m going in Monday for a dental implant where the root canal tooth was and I’m shaking in my shoes over it. They say people with auto immune can have issues with the titanium.
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I have trouble sometimes swallowing the smallest pill. It just stuck and don’t move. But lately after I’ve eaten I would feel like the food is stuck and don’t move down immediately.
As I said, I am new to the Forums and I would not know if other MG’s experience the same. It is very uncomfortable at times.
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Fear. As a survivor (I survive from day to day) I live with fear of my next flare-up. I don’t have frequent flare-ups, thank God but they have been potential killers. In the time of my 5 years of living with this condition, I have had 3 really severe “flare-ups”. The first consisted of all the symptoms of a full-blown stoke. At the time I was still 2 weeks away from being properly diagnosed with MG. When I went to the emergency room of a VA hospital the emergency department physicians were sure that I was having a stroke. But the only way to confirm that would have been to give me an MRI but they refuse to do that because I had a small coil loop recorder implanted underneath my left breast to monitor my atrial fibrillation. They said that my coil loop recorder would damage their MRI equipment. But they kept me for 2 days during which time no neurologist saw me. So I checked myself out against medical advice and took an ambulance to a different hospital. They immediately gave me an MRI and told me that I was not having a stroke but they didn’t know what the problem was and none of my symptoms had abated during that time. During the following two days I was seen by their entire neurology staff five board-certified neurologist and none of them knew what was going on with me. My symptoms slowly abated and they released me from the hospital. Two weeks later a VA neurologist told me that he thought I might have MG. So they tested me and VOILA…..MG. On the other occasions, I actually flatlined. The first time was when I was at home and I began experiencing severe difficulty breathing and I called an ambulance. At the very second that the ambulance pulled up in front of the ER, I went into full respiratory arrest. The ER physicians saved my life by intubating me and giving me a high dose of a powerful IV diuretic because my lungs had filled up with fluid. What followed was 11 days in the hospital with IV I G and IV anabiotic’s. But they saved my life.
What followed was 11 days in the hospital with IV I G and IV antibiotic‘s. But they saved my life.
The third time, I was already in the hospital after having open heart surgery. I was still in I see you two weeks after the surgery when I flatlined. Once again my lungs had filled up and my and stopped functioning. That was followed almost immediately by cardiac arrest. I had a full team of physicians and nurses rush into my room and they manage to save my life.
I have constant symptoms on an every day basis but compared with my more dramatic “flare ups” they are a mere annoyance.
what I think is killing me is my fear was I wait for the next major event in living with MG.-
Ari, you and I have very similar fears. Whenever I think about my biggest flare-up, my body floods with fear. Whenever I get scared of the future, I just try to focus on what is going on in the present and the things I can control. I always call my neurologist if something feels wrong. I always used to think I was overreacting, but I’d rather overreact than end up in the hospital.
You are not alone. I hope this forum can help lower the amount of fear you feel. We’re all with you!
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Good day –
I also am receiving good care from the VA. Great PCP and Neuro.
I have a Rx for Baclofen 25 mg. My PCP wrote this script. I only use it when my legs are crampy, tingly and uncomfortable. Usually one does it and I go to sleep. I have not used it during the day as the leg issues usually occur in the evening.
I have always struggled with trying to describe and quantify the severity of the “Flare”, especially for me.
My understanding – What Ari experienced above, would be labeled as a “Myasthenia Crisis”. A “Flare” would be the exacerbation of the typical/untypical symptoms. IE: Double Vision and such.
A Flair for me would bring on rapid breathing/difficulty breathing, extreme fatigue and the Mestinon Sweats. These occur maybe a few times a day, maybe more. Usually brought on by me overdoing physically or when I experience emotional stress. When I do gardening and light lawn care, I work to the point of shortness of breath, heavy sweating and a heavy feeling of fatigue – just can’t move. My work periods usually last for 15 to 20 minutes at a time. I will cool off, hydrate, and rest for 5 to 15 minutes and do it again. The hard thing for me is understanding when I go over the line. When this occurs, for me, I may or may not have any increasing symptom severity until the next day. The last time this happened, a number of weeks ago, brought on the dreaded DV (Double Vision) and that was the first sign that I had over done. This along with increased severity of the general symptoms got my attention.
My medication regimen includes Prednisdone. I had reduced my usage from 20mg/day to 15mg during this time in an effort to wean down to 10mg every other day.. I felt I could temporarily increase my Prednisdone to 20mg and this increase would probably reduce my DV and other symptoms. I took 20mg and contacted both my Neuro and PCP. I did check my vitals.
I took another 20mg the next day and then reduced to 15mg the next day and I am now down to 10mg/day. After my Prednisdone increase to 20mg/day my DV was back to normal (I always have some).
I would classify my above experience as a Flare moving to Crisis.
I do not know how to quantify the severity of what I would call Pre-Flare events. I think these Pre-Flare events happen numerous times a day – maybe.
Sorry about the ramblings…..
Scott
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When MG symptoms happen, I mentally step away and analyze the environmental conditions and what I was doing at the time. This approach has been hugely beneficial. I’ve learned exactly what I can and cannot do. The results have been surprising.
I’ve learned that I can use my PC longer if I use the touchpad instead of a mouse (reduces repetitive arm motion). I’ve learned that doing yard work in the direct sun for just an hour will ruin my day. But I recently did 9 hours of work with landscaping rock and concrete pavers on a cool, overcast day, while taking a 15 minute break every hour. I’ve learned to always keep an eye on the temperature and humidity so that I can anticipate issues and adjust my activities accordingly. Sometimes I plan my day so that I am active in the morning and have scheduled down time in the afternoon for the subsequent punishment by MG.
My flares are caused by several conditions:
- Humidity is by far the worst influence. Even if the temperature is low, high humidity will affect me every time.
- Heat. I function well below 70 degrees. I can function reasonably well at higher temperatures if the humidity is low. High temp + high humidity = a bad day.
- Stress. For decades I thrived in high-stress jobs. Now, I can’t even engage in minor debates without my speech failing me.
- Repetitive motion. I can lift heavy objects, but using a computer mouse for an hour renders my arm useless.
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Wow. Thanks for the observations. I feel like I’m looking in the mirror when I read your flare conditions. I need to learn not to fight it – MG – but make appropriate adjustments.
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That’s right on the money with work stress. Makes my tongue feel like it’s 10x it’s normal size. I have that thick tongue feeling frequently it’s my worst symptom.
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I agree. It’s like losing a leg. The true impact reflects your ability to adjust as much as it reflects the actual disablement. Of course, people with severe MG are at the mercy of the condition. But the rest of us can reduce MG to being an annoying nuisance by working with it, not fighting it.
I’ve had several physicians tell me the I have significantly reduced the probability of dire consequences by maintaining a positive attitude and by not letting MG dominate my life. It’s always there, but so am I.
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I wanted to reply and say how sorry I am that some of you are having many more severe symptoms than I am. I was diagnosed quite quickly at a Medical University here in my state. I will share the regime my Neurologist has had me on after I had an MG crisis 2 weeks after being diagnosed, and it seems to be working fairly well. I get IVIg for 2 days every three weeks, take 90 mg. of Mestinon x 3 per day, 1500mg Cellcept in the morning and 1500 mg in the early evening. I also take 10 mg of Prednisone daily ( thank goodness down from the 60 mg. per day I started on in December 2020). My biggest concern right now is that my Pfizer vaccines in Feb. and March of this year produced a negative antibody test, so basically I am not protected. I sought the help of an Immunologist at my doctors suggestion and did receive the booster shot as soon as it was approved for immunosuppressed patients. He will test me again at 8 weeks from that booster. I have a large family of 8 grandchildren, 7 of whom too young to be vaccinated. I live in fear every single day of contracting Covid as they tell me I will certainly end up needing a respirator if I do. I am super careful, double mask now, never eat inside a restaurant and truthfully seldom eat outside because I live in a hot and humid climate. I deal with fatigue everyday, folding laundry feels like climbing Mt. Everest! I went for a year without seeing my grandchildren but now, at age 76, I am not willing to continue that. So my biggest fear is catching Covid! I can deal with the rest. I am blessed to be older and retired, and I am ever so sorry for all of you that need to work when you are so fatigued. Hopefully new and better drugs are coming soon!
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Hi Clair
Here in South Africa and especially the Bushveld areas like Limpopo province, where I live, the heat really gets to you. It is only 2 weeks into Spring and I get so weak and sweaty. So I decided to brave the cold pool now. I usually only start swimming in October. Well, I braved the 19° cold pool and as I did 20 lenghts last year, before MG flare-up, I expected to only do about 4 lengths. When I hit the water and started swimming I couldn’t stop. My energy levels shot up. I eventually did 12 lengths and could not get out of the water. I felt so good.
So, I think, we do better in cold. I read that extreme cold are not good for us but let me tell you it is better than the heat.
Just on a nother point. I will not take the vaccine. Just my choice.
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Hello Rina,
I can sympathize with you about the problems of heat. I live in central Indiana, USA, and our heat in summer is similar to yours. I also suffer from small doses of it. I’m glad you have a pool to relieve and refresh yourself. I retreat to the AC or shade. I work outside or golf in the mornings or late afternoon. I’m thankful to be able to work around most of my debilitating symptoms.
We are entering Fall just now, and I will be glad for the cooler temps.
All the best to you and yours. Stay well and safe.
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I’m so grateful to you all for sharing your experiences! I was diagnosed 2 years ago & was 1st prescribed with Mestinon & Prednisone. After about 2 months, I did stop the prednisone because my mental status was greatly affected. Thankfully it did clear my double vision.
Recently, I’ve been flaring almost daily, mostly speech trouble & intermittent double vision. Breathing difficulties haven’t happened as often but it’s still enough to concern me as I can’t get in to the neurologist I was referred to until January.
At this very moment, my muscles are twitching in my face, abdomen & arms and my tongue feels huge. I had reduced my Mestinon to 30 MG 3 x a day until this started about 3 weeks ago. Now, I’m thinking I may need to take my full dose of 60 4 times a day again. I’m just hoping it settles down & I’m just winging it until I can get seen. This year, I’ve had a lipoma removed from deep in my abdomen & a melanoma excised from my arm. Maybe these 2 surgeries flared me up. I’m still going though!
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Hello Stephanie…
Thank you for posting on here. Every story is different and interesting. I have a couple questions. First, how did prednisone affect your mental status? Secondly, why did you reduce your Mestinon? Did your symptoms fade?
I’m one year into my diagnosis and have been on Mestinon from the beginning. After some weeks and worsening symptoms, I began IVIG infusions. Later, an immune suppression Rx was added. All of these together have gotten me back to a fairly strong place 1 year later.
It is unfortunate that you cannot keep in contact with your neurologist. I am happy to have an amazing doctor who is always ready to answer a question or help me with my treatment. I believe you should do what you can to seek out a neurologist who cares about you and wants to help. That would be the first thing I would do.
In the meantime, I believe that I would take the full dose of Mestinon prescribed. There are a few downsides to Mestinon. Prednisone, on the other hand, can have some serious side effects.
Also, One of the greatest enemies of MG is stress. Having that lymphoma removed must have caused a good deal of stress. I would imagine that played a huge part in your flare-ups.
I wish you all the best… Keep posting.
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Thanks for posting –
Just a couple of thoughts –
I usually email my Neuro once or twice a month with a question here and there. I have not tried, but believe, if I had to talk to him he would be available. It might take 24 hours but he would get back to me.
Sounds to me like you need treatment, Mestonin may help you lots. You should be taking your dosage. If Prednisdone is not available to you, is there nothing else that you can take?
Put a call into your Neuro and explain to the nurse what is going on with you, and request assistance. Do you have a physician that you can contact regarding your symptoms? They might be able to provide a Rx for muscle twitching and stuff like that. My PCP is well aware of my MG status and would/could contact her for help. She has Rx’d me to reduce muscle cramps as well as calming agents.
Stress is not good.
Take care,
Scott
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Thank you for the response! Prednisone makes me extremely irritable & I became intolerable even with myself. At the time, I was seeing several doctors for various issues & I believe some of my meds were working against each other. I’ve been searching for a neurologist that can help & have had the other issues take precedence in the meantime. It’s hard to find a good fit especially with the bounds of insurance guidelines.
I had taken less Mestinon because my symptoms subsided & felt the full doses were too strong for a period of time. I’m glad you’re receiving the treatment that works for you! I’m sure it’ll happen for me at some point. I’m a little fearful to be honest but I’ll push through.
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I was diagnosed with MG in 2014, had a thymectomy one month later and have been living with/managing mild to moderate symptoms since then. I am on pyridostigmine (Mestinon) – up to 6 tablets per day. Recently I have had more trouble (maybe these are flare-ups) with speaking. I get what I call “mumble-mouth” where I just can’t enunciate words clearly, my speech slows and gets pinched and nasal-y. This is tough because I basically talk for a living (university professor)! Also tough because I don’t always know what the triggers are, though generally I know that if I try to talk for more than 20-30 minutes I will have difficulty. I have scaled back teaching hours and am moving to part-time work but it is still a challenge. My thoughts and prayers (truly) go out to all of you with MG — your stories inspire me to keep going!
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Courtland… I completely understand the mumble-mouth problem. That is my first MG difficulty. I also speak for a living (pastor) and have to ration my words to get through a 30 minute message. I have cut back in many areas to accommodate.
I am on a pretty aggressive therapy…. 8 or 10 pyridostigmine/day, immune-suppression, and 2 day IVIG every 3 weeks. That keeps me able to work full-time and function at home.
My triggers are heat, stress, and fatigue. I have to guard against all these.
All the best to you going forward. Glad you’re able to continue doing your job. Stay safe and well.
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Thanks Tim, I am not at the same level of aggressive therapy but of course one never knows what the future may have in store! Right now I am trying to manage my triggers (heat, stress, fatigue, same as yours) and maintain a healthy work-life balance as best I can. All the best to you as well.
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Courtland: ‘though generally I know that if I try to talk for more than 20-30 minutes I will have difficulty.’This is very common with Myasthenia Gravis, it’s best not to talk for too long a time as you have to remember that you are using muscles when you talk [jaw and tongue and lips] and it will fatigue you. Also try not to stand for too long either as that will fatigue you as well. I always top myself up with Mestinon 10 mg if I have to talk on the phone for too long as my voice just fades away [another common symptom]. As I have been diagnosed for just over 48 years I have been through so many confusing happenings that I have gotten used to them and just accept them and try to find a way to alleviate them [rest is one of the best ways to alleviate fatigue] also if you are concerned about something strange happening to you please talk to your Neurologist for advice on how to handle it.
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Carole (and others): It is discouraging on the one hand to hear so many stories about flare-ups and episodes of MG crises, as well all the different meds and treatments people need to manage. On the other hand, I am so encouraged by all the stories of resilience and survival — year after year, decade after decade! I am in my 7th year post-diagnosis and post-thymectomy. So far I am on Mestinon only (now taking 6 tablets per day) but have been discussing other options with my neurologist as my speaking problems (“mumble-mouth” and “stumble-tongue” are just two of the semi-affectionate names I give it) have increased. Several people mentioned fear as an ongoing or frequent feeling. There is so much uncertainty about the varying trajectories of MG over time that fear is almost inevitable. For me, I address it both objectively as a symptom I can discuss with my family and my care providers and subjectively as a feeling or mood that I can deal with myself through prayer and meditation. As Frank Herbert wrote in “Dune” (great book and now a great movie) “Fear is the mind-killer.” We may not eliminate it but we can learn to live with it. My mantra is: “manage your meds” meaning both med-ication and med-itation. If our minds are free to live in the blessings (and the challenges) of each day, then fear is just another passing feeling and will not overcome us.
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I just had some major dental work done. A dental implant put in my jaw due to a massively botched root canal done 6 months ago (perforated sinus during procedure that caustic root canal cleaner material burned my sinus and jaw) Pretty worried about a MG flare up. I’m most scared by dental work because of all the drugs they inject into you and you need to usually take afterwards for a major procedure like antibiotics pain pills etc . I went complete under using propaphol too because I cannot get entirely numb ever and it’s very stressful and painful getting dentistry performed . I was wondering if any of you might have this not getting numb issue also? I’ve always wondered if it’s related somehow to my MG or a result of it. So far I just have a tiny bit of numbness in my upper lip which I’m praying will go away. Anyone have MG flare up issues with dental work? I get some swallowing issues which I hate the most about my MG. Just waiting for something that might happen is the worst part. Thanks for listening.
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Amy… I just finished 30+ dentist visits with way too much Novocain and drilling, etc., for a palatal lift to help my MG weakness. I got stronger throughout my ordeal because of my treatment program and did not see any added weakness due to dental work. I had a bridge replacement, tooth pulled, crowns redone, and a lot of mouth stress over 9 months.
Of course, everyone has a different level of stress with dental work… always our enemy. That might be your biggest culprit.
There are some antibiotics that dentists use that MG patients should not take. Check with your neuro or pharmacists about those.
All the best to you. Stay safe and well.
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Hi Amy
I am in the process of getting a tooth extracted then an implant (after a bone graft). Quite stressful and triggering of some flare-ups though I managed on local anesthetics and the numbing itself was not a problem. As for antibiotics, my neurologist says Amoxycillin is not contra-indicated but check with your dentist and other providers first. All best to you!
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Thank you so much for your responses. it does help having other people with MG to talk to. I am taking amoxicillin and trying to get by in extra strength Tylenol. I figure an infection and pain might do more MG damage than a relatively safe antibiotic.
I went completely under to avoid more stress of enduring painful procedures. Wow I’m in awe of your number of dental procedures and I’m glad it is helping I hadn’t heard of such a procedure . Plus you guys just having just local numbing you are rock stars. I’m a complete chicken.
My ordeal started in March but most of the time was healing enough for the implant. I take my dental health seriously so having this happen was unexpected but necessary. I think one of the worst parts of this disease is worrying about symptoms when you do things. At least for me it’s always in the back of my mind. I do see a therapist for this issue and when things are going well I am fine it’s in time like these that it’s just worry. I really hope I’m not like this forever, maybe some day it will lessen. -
Hi All,
I was diagnosed 10/2020 by a neurologist after 8-10 years of graduating symptoms which began with droopy eye, double blurred vision, shortness of breath, fatigue, upper body weakness which fatigues out with usage. I was dx’d seronegative MG.I had spent a good deal of the 5 years prior dysfunctional and in bed a lot. Showering, drying hair, putting on makeup would out me back in bed, SOB and exhausted.
I was put on prednisone by a rheumatologist prior to MG diagnosis due to positive ANA and centromere antibodies and we figured out a low dose gave me a portion of my life back.
After diagnosis mestinon was added, initially, 2×60 mg, now up to 3.5 x 60 mg. Prednisone was upped to 15 on the way to 20 but side effects stopped me at 15 and I’ve backed down to 13.5 mg, which just barely mostly controls symptoms. I had prisms put in glasses which helps when I’m at my best but not always at my best.
Stress, HEAT, excess talking, over doing physical activity sets me off.
I’ve been really great since Fall arrived and temps are down to mid 60-70 in the day.
Today I got off schedule, window washer here, I’m outside talking, it is in the sun and BAM, I’m short of breath, one eye closed and so here I sit writing this. Which I will find reading and sitting at the computer will wear me out as well, so can only do so much of that.
and like many of you state, 60-90 minutes of sleep will refresh me.
As a result I have just taken 4 mg more prednisone to see if it helps.
I’m looking for input from this MG community to see if this sounds like how any of your lives go this way.Reason…..I recently moved, saw a new neurologist who thinks my disease may be a muscle (genetic) disease. Possibly with ocular MG and wants me to do a muscle biopsy. He says that because only 2 of the 20 muscles in the nerve conduction study done on my forehead does not give positive diagnosis. This was after 2 tele health appointments where he initially wanted to sign me up for IVIG.
After 10 years of the symptoms, Hundreds of tests, cardio, pulmonary, rheumatology, etc only to get confirmation that I am healthy and cannot find anything wrong.
Everything I read and hear like on this site, tells me MG is the correct diagnosis given I fit 10 out of 10 of the criteria for diagnostic symptoms but of course as I do not test out with the blood tests, so makes it difficult to get the true diagnosis.
I read how some of you manage with only immunosuppressants and mestinon, while others go the IVIG and cell crept route. Is this a matter of what is available to each, the doctors choice or truly does it vary that much that you can get by with less treatment?
Thank you for reading and appreciate any input/ feedback any of you may have.
Theresa -
Hi! Theresa, I have been diagnosed with ocular MG two years ago. Started with the dropped eye lids and double vision. Like you I am on 3 x 60mg mestinon per day and 19 mg of prednisone every other day. I find that no two days are ever the same. Although the eye lids are now lifted-I get discomfort around the perimeter of the eyes. Sometimes twitching, sometimes fuzzy colours. I also have a prism on my glasses but recently I am struggling to read as the double vision kicks in. I’m ok on distances. I live in England and my neurologist has never mentioned this IVG treatment which I hear about a lot on the news pages. The medication is not easy to take it affects my stomach mainly(bowels) also get terrible cramp in ankles and lower shins. And the sensation in my feet is very strange. My neurologist says if it’s so bad, just stop taking the medication and suffer the consequences!!!! I have now started to get pain in my right arm and shoulder and I am hoping that the disease has not now developed into the muscles in my body. Although not a life threatening illness, it is certainly life changing. Good luck with your ongoing treatment. Regards Hilda
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Theresa,
When I got my diagnosis several years ago I also tested negative for MG the first two times. Finally I took it upon myself to go to the Wilmer Eye Institute in Baltimore, part of John Hopkins and that is when the optical neurologist found that I had MG. I am on 4 pills of Mestinon down from 7 per day, 40mg of Prednisone up from 20mg, 1500mg of Cell Cept up from 500mg and IVIG every 4 weeks. I still have my bad days but I have no idea how bad they would be without the meds. My meds are by the determination of my doctor who I keep in close contact with. I haven’t had the bad flare ups that some on here have experienced. I have the droopy eyes, double vision that will not get better or go away, aching arms and legs, swallowing issues and gastronomical issues from the meds.
I think like so many things this disease varies from person to person. No two will have the same regimen of meds. I hope you get a diagnosis soon since that is when I started taking all of the meds and they do help. GOOD LUCK.
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I was “fortunate” to be hit with late-onset MG. 1st event was only diplopia. 2nd and most recent included diplopia, drooping eyelid, difficulty swallowing and chewing, slurred speech and facial muscles weakness. I didn’t receive the diagnosis until the 2nd event. I now have Mestinon on standby for the next event. At this point I don’t have any clues about my potential triggers or how long they might take to manifest the MG. Any hints or suggestions for this newbie on what potential triggers to look for or avoid? Any advice or suggestions are much appreciated.
Mike
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Hello, I was diagnosed with ocular MG in Dec 22 with mild symptoms that went away with Mestino. Had a thymectomy in March and experienced almost full remission for 2 months.
Right now, 2 weeks into my 1st flare up with generalized MG with fatigue, limb weakness, double vision, ptosis. Taking immunosupressors but no improvement. How long does a flare lasts? Should I be patient or request change to my prescription?
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