Checking for MG Symptoms Is Part of My Daily Routine

Michelle Gonzaba avatar

by Michelle Gonzaba |

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I consider myself incredibly lucky. While I’ve had a couple small flare-ups from myasthenia gravis (MG), I’ve been mostly symptom-free for the past five years.

It’s a weird feeling — the transition from total weakness to no weakness took years, but it feels like I have lived two different lives in a very short period.

Although I’m not dealing with any symptoms at the moment, MG has completely changed my day-to-day life and routine. Part of that routine is my morning checklist.

First on the checklist are my eyelids and eyesight. Am I seeing double? Does my left eyelid feel significantly heavier than my right one?

It’s an easy first symptom to check off my list — I can instantly tell if there’s a problem the second I wake up. To fully test my eye strength, I stare at a fixed point with unblinking eyes for about 10 seconds. Yes, I look very creepy doing this, but it gets the job done.

Next are my arms and legs. To check my arm strength, I raise them up in front of me like an old-school mummy and hold them there for 10 seconds. If I have no problem with my arms, I move on to my legs. My expert-level test is to move them as if I were pedaling the world’s slowest bicycle. Don’t worry, the slowness isn’t due to MG, it’s due to how out of shape I am. I can’t blame myasthenia gravis for everything!

The last part of my body that goes through the rounds is my mouth. Mouth weakness was my first sign of MG, and I always come back to it as the first step in the slippery slope of my MG journey. To check its strength, I puff up my cheeks like a chipmunk and poke at them to see if my lips give out. It looks much more dignified when my neurologist does this test. If my mouth stays shut and the air stays where it’s supposed to stay, I’m good to go. 

I know what some of my fellow MG people may be thinking: Aren’t the symptoms better in the morning since your body has been resting all night? If you’re asking that, you are correct. But in my experience with MG, the time of day had minimal influence on my symptoms. Whether it was early in the morning or late at night, my weakness was consistently bad. Because of this, I make the effort to check my body before I even get out of bed.

So far, I’ve been lucky. But I know there’s a strong possibility I may feel off one of these mornings. My mummy arms may fall or the air from my mouth may make an inappropriate noise, but I won’t be afraid. It wouldn’t be the first time.

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Comments

Sue Parsisson avatar

Sue Parsisson

Have we had any feedback from people with MG, who have had the Covid vaccination
---good,bad and indifferent? I know that it is early days, but I did wonder if there was any data. Thank you,Sue.

Reply
Michelle Gonzaba avatar

Michelle Gonzaba

Hi Sue! I asked my neurologist the same question. She didn't have much information but recommended I get it. I will be receiving my first dose soon so I will write a column about my experience. As always, check with your doctor and health team. Thanks for reading!

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Roger Carpenter avatar

Roger Carpenter

I suffer with MG. How will I find out if I have Thymoma? I had Graves disease in the year 1995. I chose the radioactive iodine treatment at a high dose. I have been on Synthroid every since. I also suffer with Idiopathic Pulmonary Fibrosis, leaky heart valves, plaque psoriasis, and several other Medical complications.

Reply
Michelle Gonzaba avatar

Michelle Gonzaba

Hi Roger! Your doctor will need to check for thymoma. My thymus was removed but only because of the possibility it was causing my MG. I don't want to give advice or "knowledge" as I am not a medical professional. Thank you for reading and hope you are feeling well.

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Vi Dian G. Abalos avatar

Vi Dian G. Abalos

I'm very much happy getting acquainted with other MG patients 2017,I'm from Philippines.When I acquired this disorder,suffered from MG crisis,intubated in an ICU for 6 days fortunately,thanks I survived.2018.. I had my Thymectomy,I'm so lucky and very much grateful because I'm under the care & management of the best neurologist in the Philippines a very compassionate,kind,caring physician,Dr.Marita B.Dantes,National Kidney & Transplant Institute.She always following me up every now & then,that's why though I'm taking Prednisone & Mestinon but it in its low dose. I can work normally as a teacher as if I'm not an MG,patient.

Reply
Michelle Gonzaba avatar

Michelle Gonzaba

Hi! I am so happy you are being treated and cared for by such a great neurologist! My journey is really similar to yours-intubation, thymectomy, I'm also a teacher! Thank you so much for sharing your story. I, along with other readers, love to hear other MG patients' stories. It helps us feel less alone. Sending you good vibes!

Reply
Vi Dian G. Abalos avatar

Vi Dian G. Abalos

I'm an MG patient too from Philippines.But now I can work normally because I'm under the management of my neurologist from National Kidney & Transplant Institute,Dr.Marita B Dantes,caring,kind & compassionate physician.I got MG last 2017,got crisis,intubated for 6 days in ICU..I'm still have my medication but in a low dose Prednisone & Mestinon

Reply
Ken Jones avatar

Ken Jones

Michelle seems to have a very similar story to mine with similar original symptoms to the ones I experienced. It's over 13 years since I was eventually diagnosed with generalised MG but for the last four or five years things have been good and for two years I have been told by my consultant I am in remission - although I had a slight recurrence of some symptoms this past winter following on from some major surgery. However, like Michelle, I will never take things for granted and these simple checks sound like a good start to a day for me. Thanks for the tips.

Reply
Michelle Gonzaba avatar

Michelle Gonzaba

Hi Ken, thanks for the comment! I've also been in remission for a few years but never take my eye off of MG. It's taken me a long time but practicing gratitude has really helped my mental health. Thanks for reading!

Reply
Amy avatar

Amy

This is a great article. I thought I was the only one who did this. I do put myself through a lot more rigorous check but everyone is different. I use one of those grip strengtheners and do 10 squeezes each hand. I check my eyes my tongue and I do the puff test too! I hold my arms and legs up. Everything checks out I’m good to go. Thank you for making this seem like a normal part of MGers routine.

Reply
Michelle Gonzaba avatar

Michelle Gonzaba

Hi Amy, the grip strengtheners are a great idea! Now I want to add that to my daily check. Thanks for reading and hope you are doing well!

Reply
Maxine Pagliaro avatar

Maxine Pagliaro

Hi
Thank you for the information I’m only just learning about my recent diagnosis of MG
May I ask what you do if you do notice symptoms when you check in the morning also what medication are you currently taking for it? Kind Regards Maxine

Reply
Michelle Gonzaba avatar

Michelle Gonzaba

Hi Maxine! Currently, I am on no medications, but if I feel some weakness due to MG, I start taking Mestinon. I had a flare-up a little while ago and luckily only had to take Mestinon for a few weeks. When I was first diagnosed, I was on steroids, Mestinon, and Cellcept. I hope you are doing well; I know how scary it is when you are first diagnosed. This website has many resources for you. Thank you for reading and commenting!

Reply
Geneva avatar

Geneva

I am glad Ms Ganzaba is
doing well, but I did not find her
little article to be helpful. Try writing something with more meat; such as perspectives on coping with the disease.

Reply
Michelle Gonzaba avatar

Michelle Gonzaba

Thanks for reading Geneva and hope you are doing well too!

Reply
Dennis avatar

Dennis

So if you find symptoms during your check, then what do you do???

Reply
Michelle Gonzaba avatar

Michelle Gonzaba

Hi Dennis! If I have any weakness, I start taking mestinon again. My doctor and I made a plan of how much and when I should take it of I feel any weakness. Thanks for reading!

Reply
WILLIAM H SUPHAN avatar

WILLIAM H SUPHAN

I got the Covid shots from Phizer and had absolutely no issues.

Reply
Michelle Gonzaba avatar

Michelle Gonzaba

That's awesome William! Thanks for reading.

Reply
Joseph Tinervia avatar

Joseph Tinervia

I am New to gMG and am very appreciative of the MG News and comments from others with symptoms and stories.

Is there anyone with experience of SOLIRIS therapy and treatments. After treatments of IVIG PRIVIGEN, Mestinon, Prednisone my Neurologist has directed my therapy to SOLIRIS. I would appreciate any experiences any other patients have managed with the SOLIRIS v. PRIVIGEN..

Thank You for this Platform

Reply
Michelle Gonzaba avatar

Michelle Gonzaba

Hi Joseph! I am so happy you have found this site. While I don't have experience with Soliris, I'm sure other patients do. We will be launching a myasthenia gravis forum on Wednesday May 12th where patients can discuss all things MG. This will be a place where you can ask other MG patients about their experiences with Soliris.

Thanks for reading and I hope the website and new forum help you as you navigate your MG journey.

Reply
Ann Marie Hetrick avatar

Ann Marie Hetrick

I received the covid shot phizer and had a flare up of my symptoms after the second shot. I had no problems with the first shot. After the second shot I thought I was going to be okay but the fatique and muscle aches were overwhelming. I started having muscle weakness, blurred vision, and sensitive to light. I had to receive an ivig treatment and have been fine since. I would still take it again because the side effects would be better than getting covid. I had been symptom free for 5 years before the shot. Thanks for this forum.

Reply
Michelle Gonzaba avatar

Michelle Gonzaba

Hi, Ann! Thank you for sharing your story about the Pfizer shot. It's so important for us with MG to share our experiences with it since there isn't a lot of information about it. I was lucky; after the first shot, I had my arm was very sore but the second shot made me feel pretty lousy. But no MG symptoms.

I am so glad you are feeling better after IVIG. Thank you for reading!

Reply
George Tvardy avatar

George Tvardy

I have gotten both doses of Pfizer in late Dec/early January, and then a booster mid September. Fortunately, I have had no side effects to any of the doses. I feel very fortunate.

Reply

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