The Basics of Myasthenia Gravis: Symptoms, Causes, Treatments

In this video, I'm sharing the reality of myasthenia gravis with you. Myasthenia gravis is a rare condition that can cause muscle weakness and paralysis. This video is intended to help you understand the condition and to provide you with information about how to care for yourself and your loved ones.

If you or a loved one is living with myasthenia gravis, then you should watch this video! By doing so, you'll learn about the symptoms, the causes of myasthenia gravis, and the treatments that are available. You'll also learn about the support groups that are available to you and the resources that are available to help you cope with this condition.

August's chronic disease spotlight is all about Myasthenia Gravis! A chronic autoimmune disorder which effects millions of people worldwide. In "MYASTHENIA GRAVIS: WHAT YOU SHOULD KNOW" I review the signs and symptoms, the challenges with managing this disease, the various treatments available, and the biggest concerns we have when it comes to helping sufferers live normal lives.
If you or someone you love is struggling with this diagnosis please drop a comment below and let me know how things are going and what treatments you've tried.
As always stay happy and lucid 💡
Danielle

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Timecodes:
0:00 Intro
0:13 What is MG?
0:40 Signs and symptoms
1:54 Ages affected
2:04 how MG is diagnosed
2:30 Acetylcholine functions
3:13 Cholinesterase inhibitors
3:40 Endrophonium test
4:17 Seronegative MG
4:36 Acetylcholine receptor (AChR)
5:50 Nerve conduction studies
6:14 Electromyogram (EMG)
6:45 Ice pack test
7:47 1st line treatment
8:13 Thymectomy
9:12 Plasmapheresis
9:37 Immunoglobulin (IVIG)
10:14 Myasthenia crisis
12:15 MG support

LINKS:

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Please watch: "DYSAUTONOMIA/POTS: A Frightening Reality"
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[thehoylecakefiles]

I have it. Just finally diagnosed last year only with ocular but while waiting til July 2024 to see the actual Neuro-muscular specialist - I am feeling what has been described as the general Myasthenia Gravis… I’m trying to hold to my job and I use FMLA but they act like they don’t want to give me the time to finish getting fully checked out. This is absolutely miserable because I’ve been fighting with feeling messed up with no real diagnosis since I’ve been 15. I’m 43 now. And I only got diagnosed also with Hashimoto’s back in 2018. I’m just feeling defeated most days I must admit but I keep fighting to keep going as I know the rest of us have

[orangescout]

I was very recently diagnosed after experiencing the worst 4 months of my entire life. I’m 54 and what began as fatigue and apnea quickly progressed into debilitating fatigue and limb weakness, followed by tremors, double vision, disturbance in balance and walking and finally difficulty breathing, chewing and swallowing. I went through multiple trips to my doctor, then a cardiologist, then an ENT specialist and finally to a neurologist. My greatest fear was the onset of ALS but my diagnosis became more clear on the same day of my neurological exam. I began treatment (3 days ago as of this writing) and the results were immediate and profound. I was placed on a medical protocol involving prednisone and pyridostigmine. I had frank improvement within 2 hours, most specifically in the areas of breathing, chewing and swallowing. I still tire or experience distressing fatigue in my limbs and I have to be very cautious with even minimal exertion. That said, the relief in being able to breathe and swallow and speak (especially in the evening) has given me the biggest hope and uplift I’ve experienced in months. I will share with other readers that the side effects (for me at least) associated with the medication have been unpleasant but not unmanageable and are WELL WORTH the trade off. I have experienced mild nausea, diarrhea, increased urination and perhaps most disturbing an increase in the amount of salivation, which is more copious and requires me to expectorate frequently. Still…this is a very small price to pay for the ability to see, swallow and breathe in relative comfort. I’m still awaiting my seropositive confirmation which I expect in the next few days. I am first of all grateful to the neurologist who detected and treated this illness, but I truly want to thank the creator of this video for putting together such a thorough and comprehensive video and for her passion in assisting those of us with neuromuscular diseases. I’m trying to learn as much as I can and this video was a blessing to find. For the many of you recently diagnosed or for those with these symptoms awaiting diagnosis, you all have my sincerest hopes for improved quality of life and increased comfort as you begin to understand more about your condition. I’m learning that there is a tribe of us out in the world. While this appears to be a rare disease, there are thousands of us. I will be thinking of all of you in the days ahead. Thank you again for this timely and thoughtful video. It made a difference in my life and is a brilliant primer to share with those close to me to help them understand my condition. Bless you ❤ 🙏

[julieberns]

Thx the video. I have MG. The struggle is real. I’ve done all treatments and nothing is helping me. I get jealous seeing others do a million things in a day and I struggle to shower. I recently stopped working which has lowered my stress and anxiety 🙂

Having this bizarre disease I’ve pondered a lot. while my muscles are weaker, my resilience is getting stronger. We will see how the future goes. I have faith that I will find some relief in the future. Love to all the MGers out there. You aren’t alone🧡

[mariarehrig]

This is the most comprehensive and concise discussion of MG, so much so that I am sharing this with my family so that they can fully comprehend the diagnosis and treatment of this condition. I am a neurologist, now retired and in my 70s; developed diplopia and ptosis in March 2021 and diagnosed after a positive ACH antibody test along with clinical findings. I have had occasional facial muscle involvement, including speech and swallowing difficulty, happily only transiently. I did well on prednisone after initial high dosing, where I was on maintenance of 7.5 mg on alternate days. Since January 2023 diplopia and ptosis recurred, with no benefit from relatively high prednisone doses, and finished a week of IV IG last week, but no improvement has been noted to date. Any recommendations would be welcome.

[Snarkapotamus]

As someone with both oMG and gMG, I can testify to the fact that Covid turns this stuff into something much, much worse! I was sailing along just fine - 1/2 a 60mg Pyridostigmine in the morning and the other half at night - all's good! Not anymore...my Covid cough was so severe that they didn't know exactly what to do with me. Luckily, after 5-weeks, it's pretty much in the rear view window...

[gmcmurry]

I have MG. I just finished my first infusion of IVIG (Privigen) and it looks like I am on the road to better living with MG.
This is the best MG talk I have seen on Youtube. Thank You.

My Dr and I have discussed the possibility of moving on to Vyvgart in the future.

I think that my first Covid booster (the third Pfizer) triggered my MG. More research needs to go into this.

G

[MsRoMe]

Thank you for this video. I was diagnosed with Ocular Myasthenia Gravis 3/23/22 and it has been life altering. My OMG has been very aggressive so when I find informative videos like this one, I’m extremely appreciative.

[sarahjustice]

I was diagnosed with MG six months ago. I am in the process of learning how to cope.

[briancast]

my Myasthenia Gravis generalized diagnosis: it is causing never ending breathing problems, extreme leg weakness and stiffness or numbness... penile organ dysfunctional issues, swallowing difficulties... I'm getting intravenous immunoglobulin IVIG Gammagard Liquid plasma infusion treatments every two weeks 75g at home with nurse; I'm on pyridostigmine... cellcept, & prednisone. I'm in neuromuscular physical therapy for swallowing issues, toned stretching leg muscles... for my MG: my university neurologist doctor is in charge of everything in my Myasthenia Gravis autoimmune neuromuscular disease; i haven't tried plasmapheresis yet, my neuro dr said this Plex therapy is very dangerously. I use an c-pap machine to help my breathing muscles; my neurologist -
has other university doctors like pulmonologist, urologist, and cardiologist... on board to help with my Myasthenia Gravis - I have a gastric feeding tube in my stomach, I do prescription nestle nutren protein drinks...

[goodlights]

Thank you so much for the detailed explanation. I am on my second day of taking mestinon with steroid and next will be blood test to see if I have MG. The test done to me by EENT Doctor was the ice pack and referred me to a Neurologist who gave me the medications (mestinon and steroid). Next week I will have the blood test. My symptoms is droopy eyelid on the left but now improved after taking two medications prescribed (mestinon and steroid). The mestinon is 1/2 tablet 3x/day. I do not have other symptoms aside from the droopy left eyelid. My question for you Doc is, do you know if my case is minor and I will not have those severe symptoms and will changing my diet and doing physical exercises daily will help? Please enlighten me. Thank you very much!

[mmac]

Thank you, my best friend, partner for life, girl friend received this diagnosis in August 2022. I am trying to support her every way possible, so data and warnings (what to look for ) along with what to avoid are life saving and help sanity.

[Teenibash]

Hello from Scotland. I was diagnosed with MG in July 2021. I did not have the antibodies, and my electro test was fine. I do
have a droopy eyelid and double vision, have terrible fatigue, and pain on chewing food and some difficulty swallowing. My hospital doctor will not give me a scan of my thymus. I take Mestinon 3 times a day.

[mrbb]

Keep fighting. Insurance companies have to start realizing there's more to cover than those garden variety diseases out there and we gMG people are not going to sit in the back of the bus anymore. I wish you well and don't give up the fight.

[Theeleven]

If having a thymectomy relives symptoms of double vision, do those symptoms stay gone forever? Or are they likely to return over time?

[lisanewman]

Start IVIG next week diagnosed May 2023.

[KG-ulpj]

Thank you for the very informative video. Have had gMG for 3 months. Mine effects my speech and swallowing. I have under 3 months left before retirement and am a blue collar worker with a lot of stressful duties. These duties aggravate my symptoms and I am praying to God I can make it to retirement to eliminate the stress levels. HR and upper management that are aware of my problem understand but my co workers make fun of slurred speech and not able to work as hard as before I developed this problem. I have had a 5 day IVIG and now on steroids, mestinon, and Imuran. 2nd IVIG this week for another 5 days. I am confused about exercise. Should or should I not? I think I should at least exercise my lungs.

[delermaincreative]

Recently diagnosed during a 2 month stay in Hospital, (admission, sedation & ventalation, surgery (Thymectomy), intensive care and finally rehabilitation).

I'm 38 and this has no doubt changed my life. Had never even heard of MG until Neuro started testing me in ICU. It was eventually confirmed when I was in Rehab.

So I'm still very new to the desease. I have been reading a lot about it though, as well as watching videos like this (thank you by the way) and recently joined the MyAware membership.

Any tips or advice from those with more experience with the desease is welcome (and thank you in advance).

That said, let's think positive, we've got this fellow MGrs! We wont be beaten 🧐

I wish you all the best.

Thanks again for the video. It was very helpful 🙂

[marijaprgomet]

Extremely helpful thanks for sharing your knowledge 😊

[durgasaravanan]

I have been diagnosed Generalized MG two years before. It was difficult first to do day to day activities. I had IVG two times within two years. Now taking prednisone, pyridostigmine, with immunity suppressor

[richardthomas]

I am 59 a Veteran of Desert Storm, as part of our deployment during the early part known as Desert Shield we were given Pyridostigmine Bromide which they called NAP Pills ( Nerve Agent Pills ) We were told it would help build up our resistance to a Nerve Agent attack. I ended up spending 3 days in an area that tested positive for a Type II Nerve agent. We went into full protective gear for 24 hours, after that first day they gave us the all clear, even though our portable test kits still confirmed the presence of the nerve agent. Our chemical alarms still went off alerting us to its presence as well. Our command ordered the All Clear and for us to come out of our protective gear, I went and showed them the confirmed test results and they said to disregard them. They said it was not a high enough concentration to hurt us, which is baffling since we were trained that there was no safe level and to leave the area and decontaminate immediately. Anyways they kept us there for 2 more days while we were still getting positive test results. I didn't think, much of it till recently, in January of 2024 I started getting a saggy eyelid and just thought it was a bug bite or something and would go away, but it didn't. By February I was concerned and contacted the VA and they had me go to the emergency room suspecting a possible stroke. The did a CatScan and blood tests, it was negative on a stroke. By March my eyes were looking in different directions and I of course had double vision, they gave me an appointment with an optometrist who was the first to mention Myasthenia Gravis, but were inconclusive without other tests. The recommended me to a Neurologist that appointment didn't come till May and they confirmed that I had the antibodies and diagnosed me with General Myasthenia Gravis. I also have trouble to swallow, trouble to pronounce words, very nasal, sometimes when I try to swallow it goes out my nose. I tire easily, and get winded like I have COPD or something. I can't hold up my arms for long or look up. I was prescribed none other than the medication we were given during the war, Pyridostigmine Bromide. It had a slight benefit so they doubled the dosage. That actually helped alot for awhile, except I still had to wear an eye patch to drive, too much movement to focus. Then I got Covid for the 4th time and the medicine lost all effectiveness. After recovering it has started to help again but nowhere near as good as pre covid. Recently I even have trouble typing or clicking a mouse. I can't say for sure that my case has to due with my service and exposure, but I can also say that there is no proof that it didn't. I have gone from a person looking forward to retirement to almost totally disabled, my wife is terrified that I may eventually end up on a respirator. The only reason I posted here was in hopes of finding out if other veterans from the Gulf War may have come down with this as well. I don't know what the next course of action is since the VA moves at a glacial pace, my next appointment with the neurologist is not until late August which is a long time to suffer without any help. My hope is that they will try a different approach but given my treatment upto this point who knows.