A Day in the Life of a Person with MG

Retha De Wet avatar

by Retha De Wet |

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day in the life

What is the first thing you do when you wake up?

You might have answered, “I take a shower” or “I drink coffee.” However, the first thing everyone does when waking up is to open the eyes. It is a movement so simple that most of us take it for granted — until the ability to do so has been compromised.

For someone living with myasthenia gravis, even opening our eyes prior to taking the right medicine is a massive struggle. Sometimes, even when we can open our eyes, we have double or blurry vision. This is because MG causes muscle weakness, which includes the muscles in our eyes. Being unable to see clearly, despite our best efforts to squint or move closer to a specific object, can be demotivating at times.

As I have said in a previous column, MG teaches us patience. With rest, our symptoms can improve (although improvement does not necessarily mean they disappear.) Luckily, I have found other remedies. Applying ice packs to my eyes or wearing an eye patch (if only one eye is affected) may help.

The next part of the day is getting out of bed. This also is difficult for someone living with MG, as we might suffer from generalized weakness as well. This means that all the muscles we can willingly control may be affected. This includes arms, legs, the neck, and others. Having weak arms and a weak core makes getting up from a lying position much more difficult. Think about how a healthy person would move if they had weights attached to their limbs; it would be slow and laborious. That is what moving with MG feels like.

Eventually, we have to eat. This activity may also be influenced by MG. As I take my first bite, my arms feel heavy while I lift the spoon, and my lips struggle to stay closed. Sometimes this causes food to spill from my mouth or my spoon. Eventually, I try to chew, but with every bite, I feel my cheeks and tongue becoming more tired. This sometimes leads to choking and violent coughing, which are both exhausting.

As I swallow, I may experience food getting stuck in my throat because my muscles are too weak to force it down. I have found that adjusting my diet helps most with these symptoms. I try to avoid hard-to-chew foods like beef jerky and excessive helpings of cooked meat. I have swapped my porridge in the morning with yogurt, and I try to eat only after I have taken my first Mestinon (pyridostigmine) tablet for the day.

Then, I have to walk down the stairs from my apartment to my car. The figurative weights on my legs seem to get heavier with each step, and by the time I reach the bottom I am gasping for air. This is because the diaphragm, the muscle that helps to exhale, is also affected by MG. Not only is seeing, moving, and eating difficult, but breathing is, too!

This is the reality of living with MG. Activities we are required to do daily become strenuous tasks that can leave us exhausted before the day has even started.

Luckily, MG does not affect the functioning of our brains. We are always in control of how we choose to respond to these symptoms. That does not mean that there aren’t days when we are overwhelmed by all these symptoms. It simply means that we can control our thoughts. How our friends and family react to our symptoms also can affect how we perceive them. Support is a pivotal part of managing any chronic illness.

Never forget that life is beautiful. Always keep fighting.

***

Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Comments

Cornelia Freeman avatar

Cornelia Freeman

Knowing someone with this condition & seeing them. In action, gives me a little more clarity. On their daily activity, which is really a struggle. I work in the medical field, I care I'm compassion, patient, & understanding. I work with people that are younger than me. With chronic illness. At my age I'm so grateful, thankful to God for my health. And I can spread some, joy, love, encouragement to those. That their health isn't so good.

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Rebecca avatar

Rebecca

As a person with MG diagnosed over 20 years ago, at age 42, I am struggling. The last year my insurance would not pay for my IVIG I have received for 20 years and maintained life, and have been put on Soliris. It does not work for me and now the last 4 weeks I have a hard time walking, jaw locking up, and no energy. This article explains a lot for those who don't know what I experience daily. Thank you for sharing!

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Brenda S. avatar

Brenda S.

Sue your insurance company. They will fold and pay for what you need. I was just diagnosed... I want the surgery and I want the surgery in a different state that has a hospital that specializes in MG. I will sue. Luckily my husband is an attorney.

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Barbara Amdur avatar

Barbara Amdur

I FIND IT VERY HELPFUL TO HEAR FROM OTHER PEOPLE ( OF ALL AGES) WHO ALSO SUFFER FROM MG. BUT THERE CAN'T BE TOO MANY PATIENTS WHO ARE AS OLD AS I AM! I WAS DIAGNOSED WITH OCULAR MG 3 YEARS AGO------AND NOW--AT AGE 90--I HAVE MUSCULAR MG AS WELL.
LAST YEAR I HAD 2 "BULBAR CRISES" WHICH RESULTED IN 2 TRIPS TO THE ER BECAUSE OF SEVERE CHOKING SYMPTOMS.
10 DAYS EACH TIME IN THE ICU HELPED ENORMOUSLY.
THE ONLY ADVANTAGE TO GOING THRU ALL THIS IN ADVANCED OLD AGE IS THAT ONE NEVER GETS ANY BILLS---MEDICARE AND MY SECONDARY CARRIER PAY FOR EVERYTHING!

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Gloria avatar

Gloria

Please can you help or advise me. I was diagnosed in 2014. I have had a thyetomy. Lately I find that I am extremely weak when I first wake up. However as the day progress I am stronger and stronger. I am having difficulties convincing my consultant.

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Troy avatar

Troy

Gloria,
I was diagnosed in 2013 and also have had a thymectomy. I take a small dosage of prednisone. I am very active at work, 20-30k steps, and have found that recently I am far worse in the mornings. My neurologist said it may be due to a “chemical” build up in the muscles at night due to MG. Can’t remember what chemical, maybe enzymes and toxins. I am going to try drinking more water especially at night to help flush my system. He suggested fish oils, but I think that’s more for arthritis and soreness due to old age. I know how you feel, hopefully we can get it figured out🙏 . I will try to keep you posted, my next apt is in January and I will ask again for both of us!

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Anna avatar

Anna

Sounds like Lambert-Eaton Myasthenic Syndrome. It is similar to MG but use of the muscles increases their strength. Definitely something to investigate or ask your doctor about

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Norma R Smith avatar

Norma R Smith

This was such a helpful article, it explains the beginning of my day very well. Lots of times people don't understand when you have to hold your head up with your hand or you are choking so bad you just pray this won't be your last breath. I was diagnosed August 2015 seems like eons ago but it's not. I do wish there were not others going through this ordeal too, its objectivity good that others know. I commend you , your courage, strength and compassion.
Thank you Norma

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edwin avatar

edwin

i FOUND THIS THE MOST HELPFUL INFORMATION ON THIS DISEASE I HAVE ENCOUNTERED. DOES ANYONE HAVE AN IDEA HOW I CAN CONTROL THIS COUGH OR AT LEAST LESSEN IT? AND DID ANYONE HAVE THE thymus gland removed in a thymectomy. If so, did it work or what were the results?

I am 59 and male.

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Aubrey avatar

Aubrey

I am a 43 year-old female. I was diagnosed with mg 2017..i had a thymectomy almost immediately since I fit the criteria for people gender and age with the highest remission rate. It did not help anything at all... A lot of pain for nothing. Do your research. Just because 40yrold females have the highest remission rate forMG with a thymectomy... Doesn't mean it won't work for you.. Anything is possible

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Naaz Nasym avatar

Naaz Nasym

i find reading all your articles really helpful. It helps me to know more about this disease. I was diagnosed having MG on 2006. I was 34 years then. Thymactomy was done after one year of diagnosis. I believe I am in a remission now with the mercy of Allah. it's being a long time i haven't taken mestinon. I'm driving and my regular life is same as a normal person. Last few years have been very stressful for me due to family problems. it always worried me that i might go back to a relapse. which happened some years back. But with Allah's mercy i am doing fine. So i believe out there everyone who are not feeling well today, will feel better soon. in sha Allah. May Allah bless you all. aameen

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Lisa avatar

Lisa

I was just diagnosed this week with mg can you tell me more about the thymus gland removal I'm so interested in having it although they say mine is not enlarged or tumor I just don't want to die from this disease

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Cory Adams avatar

Cory Adams

Lisa,
Very few people these days ever die from MG, so you should try to not worry about that. I also had my Thymectomy by the DaVinci robot method rather than the conventional method, which is similar to open heart surgery. I was in and out of the hospital after 3 days and my life has gone from barely being able to change a lightbulb without my arms giving out to have I g the strength of my former 18 yr old self. I rarely take pyridostigamine these days, unless I’m going to go backpacking or rock climbing.

I am a male that was diagnosed at age 42, which is young for a male and had my surgery by age 43... if your neurologist feels that it would help, I would definitely go for it.
Thanks
Cory

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Mega avatar

Mega

Hi Lisa! my mom was diagnosed with mg on april last year and it got worse until last month this year, now it all getting better after the last IVIG that she had been received for months. Not all people will have the same progress, some got diagnosed and survive just with the help of mestinon consumption, while some need IVIG since their medicine can't cover the disease if it got worse (unable to breath without ventilator), so we actually cannot compare our progress with others, just take the clues and tips from other mg patients ! After taking care of my mom and saw all the ups and downs (she was admitted to the ICU 3 time and had 5 IVIG therapy), I can tell that STRESS is the main factor that may cause mg patients condition getting worse. Make sure you are in the right environment where people are supporting you and patient enough to hear your rants. Other than depending to others' reactions toward your illness, you also need to be strong and positive to whatever it is that happen in life. Also, make sure you read a lot of journals and other scientific study on what drugs you should avoid because mg patients have sensitivity towards a LOT of drugs (antibiotics, relaxants drug, etc). Just for an example, the third times my mom got admit to the ICU was because she received a wrong antibiotics (this one is to treat her bacterial infection) which is Levofloxacin. Please search about drugs you SHOULD AVOID and tell it to your doctors if they haven't know much about it yet. My mom now eat cefditoren pivoxil which is an antibiotics too but this one is safe for her. Please take care of your mind and stay calm. God bless you ! Sending you positive hugs and don't worry, i hope you won't have all my mom's experiences, remember that my parents friends that also have MG are 80% doing okay (not being admitted to the ICU at all) even years after the diagnosis, so don't worry! The reason I tell you this stories of my mom's mg experiences so detailed are because i want people who have mg (or their close people) will be more aware of this illness because i believe no one want any kind of bad experiences and having no choice but to understand this illness by themselves. So, i tell what i've learned from taking care of my mom (almost like a spy since i was looking after her 24/7) hehehe. It was a hard times for all of us and thank God we are all well now. Take care okay ! May God bless all of you and your loved ones :)))

Reply
Mega Silvia Budaya avatar

Mega Silvia Budaya

Hi Lisa! my mom was diagnosed with mg on april last year and it got worse until last month this year, now it all getting better after the last IVIG that she had been received for months. Not all people will have the same progress, some got diagnosed and survive just with the help of mestinon consumption, while some need IVIG since their medicine can't cover the disease if it got worse (unable to breath without ventilator), so we actually cannot compare our progress with others, just take the clues and tips from other mg patients ! After taking care of my mom and saw all the ups and downs (she was admitted to the ICU 3 times and had 5 IVIG therapy), I can tell that STRESS is the main factor that may cause mg patients condition getting worse. Make sure you are in the right environment where people are supporting you and patient enough to hear your rants. Other than depending to others' reactions toward your illness, you also need to be strong and positive to whatever it is that happen in life. Also, make sure you read a lot of journals and other scientific study on what drugs you should avoid because mg patients have sensitivity towards a LOT of drugs (antibiotics, relaxants drug, etc). Just for an example, the third times my mom got admit to the ICU was because she received the wrong antibiotics (this one is to treat her bacterial infection) which is Levofloxacin. Please search about drugs you SHOULD AVOID and tell it to your doctors if they haven't know much about it yet. My mom now eat cefditoren pivoxil which is an antibiotics too but this one is safe for her. Please take care of your mind and stay calm. God bless you ! Sending you positive hugs and don't worry, i hope you won't have all my mom's experiences, remember that my parents friends that also have MG are 80% doing okay (not being admitted to the ICU at all) even years after the diagnosis, so don't worry! The reason I tell you this stories of my mom's mg experiences so detailed is because i want people who have mg (or their close one) will be more aware of this illness because i believe no one want any kind of bad experiences and having no choice but to understand this illness by themselves. So, i tell what i've learned from taking care of my mom (almost like a spy since i was looking after her 24/7) hehehe. It was a hard times for all of us and thank God we are all well now. Take care okay ! May God bless all of you and your loved ones :)))

Reply
Brenda Shetler avatar

Brenda Shetler

I was just diagnosed too. I am 47. Super scared. I want the surgery too. I have been researching and found that you want to go to a hospital that specializes in this and that you want robotic surgery. I am planning on going to Washington. Everyone is saying to prepare for an insurance company fight. Insurance might want me to try steroids for a year.

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Steve avatar

Steve

Has anyone been diagnosed with MG but had negative blood results?
I was admitted to hospital 12 months ago after suffering what was thought to have been a stroke. I lost my vision in my left eye for roughly 30mins then was left with a drooping eye lid and blurred double vision and weakness down the whole of my left side. I underwent numerous MRI’s and Bloods but everything came back normal. 12 months on and I still suffer with a drooping eyelid, blurred vision occasional double vision and more recently extreme fatigue were I can’t even walk. When I try to do anything physical like mowing the lawn or vacuuming it’s like turning on a tap, my whole body is drenched in sweat from head to toe and I find myself fighting for a breath. During these times I have also experienced extreme pains/cramps across my rib cage and can hardly catch a breath.
I am being treated for MG and take 60mg Mestinon 4x per day, they appear to help with my vision but none of my other symptoms.
Is this MG or something else?

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Ashley avatar

Ashley

I have MG and I live in PA and I struggle everyday and I’m only 40 does anyone notice living in the south with the warm (does it help the MG) because I’m always cold so then my muscles freeze up besides being weak constantly.

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Jamie avatar

Jamie

Hi I am 21 and was diagnosed 3 years ago I’ve been with the same specialist since but as she always dismissed my symptoms I’ve been looking for a new one who told me none of the right tests were done and there different types so I might have been taking the wrong medication for myself does anyone know more about that

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Anna avatar

Anna

My dr. Is having a hard time diagnoses this problem in the meantime I am suffering and I don’t even know what it is.

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B avatar

B

I was diagnosed at age 13 in 6th grade the year 2016 I had the thymecorty al eat as soon as I was diagnosed with it of course I was scared it was my first surgery and i didn't understand what was going on with my body very well now I am 16 almost in my junior year in 2020 still taking pyrigstigma although i have it mildly it still feels as if the treatment is not working too well my neurologist wants to try a new method I am just scared of what sutefects will come and how I will react to what they are wanting to switch my method too. Still feeling week dealing with this the past 4/5 years of my life still not understanding alot of what goes on and what to do throughout the day or how to diet correctly. I am trying my best to cope though

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Crystal E avatar

Crystal E

This is my first time in here and reading this has given me a bit of hope. I’m 23 and I was diagnosed with MG sometime between 2017-2018.

MG has always made things super difficult for me and being someone who already suffers from mental illnesses, MG has just stressed me out a lot. Not being able to do simple functions like hold a spoon or to simple speak sucks and puts me in a state where I just constantly feel like somethings wrong with me...MG scares me everyday and mine has slowly been getting worse.

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Barbara avatar

Barbara

I was diagnosed 2018.
Since April this year, walking has deteriorated badly. Struggling to get about. Hips feel like I have concrete around them making it difficult to walk any distance, this is making back pain real painful. Unsure what to do. Steroid make me ill?

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Capascious avatar

Capascious

Hi.. I was diagnosed with MG in April after giving birth.. It's been 4 months now... I'm taking mestinon but I'm not feeling better.. How long does it take for it to start working

Reply
Judith Valenzuela avatar

Judith Valenzuela

Hi,I'm Judith and have been diagnosed with MG right after my 60th b-day.I now have this for 5 yrs. but seems like I started feeling bad things in my eyes (twitching) and muscle weakness that I did not mind then. That was when I was 36 yrs. Old just after delivering my 2nd baby.I managed working and having a business but stress n physical works got on to me that at age 55 I feel so drained and like dying from exhaustion. I was regularly confined like 4 times a year and would see my doctor almost every month. This regular visits I guess made me stay alive and regular physical therapy together with drinking my meds religiously. I also visit a psychiatrist once in a blue moon for my stress and regular church and club activities fills me mentally.
I know that as of writing I am not on remission but I still inspire myself every waking day. My only joy is living peacefully and plainlly and having a daughter who is a doctor who helps me cope and understand more my desease.
God in His mercy will help us find a cure someday!

Reply
Julie Adams avatar

Julie Adams

I was diagnosed in 1987 with MG. I had the thymectomy done and have been in and out of remission throughout the years. I’m currently doing the IVIG treatments every other week with some improvement. Managing your MG is key... learn what works for you and doesn’t work, everyone is different. For me, heat is one of the major triggers, stress also, I try to avoid things that I know will set it off. Knowing your limitations and adjusting your lifestyle will help🙏🏻

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Chandan kumar avatar

Chandan kumar

I am just diagnosed with the myasthenia gravis and I am very much scared after reading this article.
Is it snowflake?
I can't be the earliest one?
Plz help ke god if u r there!!

Reply
Peter Christian avatar

Peter Christian

My dad died on Sunday with myesthenia gravis respitory failure he he has had a few bad episodes which was called a crisis the last time he had this crisis was back in March then he see me fine till last Wednesday then he was having this cough which made him struggle to eat swallow breathe he did not want to go in hospital the doctor said if he did go in on the Wednesday it would have made no difference to how I'll he was

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Retha De Wet avatar

Retha De Wet

I'm so sorry. Condolences to you and your family. I hope he rests in peace <3

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Wanda McSwain avatar

Wanda McSwain

Hi everyone. I was diagnosed in 2017. I may have already had it but not diagnosed. I had breast cancer in 2017. I was told that my treatments caused it. I’m only on the immunoglobulin infusions so far. My dr wants to start me on mestinon, I don’t take many meds afraid of side effects and not really sure what mestinon does. I stay exhausted all the time and have been getting chocked a lot and I only eat small bites. Had an episode just today. So very scary. This was the worst one so far. I’ll probably call my dr tomorrow. Not sure if they have the robotic surgery here but that’s what I would ant since I have had the cancer and I also have a monitor implant for my heart. Don’t want my chest opened if not necessary. Wish everyone the very best of everything. Nice to know there are people going through the same things and can talk with you about everything. Thank You

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