Current State of Treating, Managing Myasthenia Gravis

[@themysticmuse]

I like this guy. He gets it.👊

[@lollipopthief1481]

I was diagnosed in May 2022. I consider myself very fortunate compared to others with MG. Without meds I would have double vision and the droopy eye. I have had no problems with that since August 2022. My arms and legs do get weak very quickly and at some point I'll probably have to use a walker but compared to others who are hospitalized sometimes every month and ventilated or near choke to death, I can live with it.

[@Snarkapotamus]

I too was diagnosed in May 2022. I can do pretty much anything I did before but still have issues with double-vision. Right at the moment I'm also fighting off Covid but so far, so good. Rather not have either, but what can you really do?

[@lollipopthief1481]

@@Snarkapotamus What meds are you on? I take 60mg Mestinon 3x a day and 5mg predisone 1x a day. I was on 10mg prednisone but was retaining a lot of fluid and gaining weight so doc lowered the dosage. I also take Mycophenolate, an anti rejection med.

[@Snarkapotamus]

@@lollipopthief1481 - When I was first diagnosed, it was 40mg of Predisone (1x a day) and 60mg of Pyridostimine (3x a day). That was WAY too much! I went to 20mg Prednisone (for 6-months!) and Pyridostimine 3x a day. Currently not on Pred and split a single 60mg Pyridostimine. One half in the morning, the other before dinner. It doesn't do anything for my eyes so I'm going to have to find something that helps with that...

[@lollipopthief1481]

@@Snarkapotamus I'm now down to 2.5 mg of prednisone, I guess the next step is no prednisone at all. Here we are 3 months later from my initial post and Sunday was the first time I've cried because of this disorder. It's getting hard to hold my granddaughter or enjoy the benefits of playing with her.

[@Snarkapotamus]

@@lollipopthief1481 - It's definitely a challenge! Covid really made my gMG much, much worse! To the point that I'm going to do a 5-day IVIG regimen to see if I can get back to where I was pre-Covid and allergy season. It's an insidious disease without any real clear-cut solutions...

[@RachelM504]

I've been diagnosed since 2007 after 8yrs of misdiagnosis 😢 hell! I opted to do the thymectomy in 2009 & honestly my symptoms haven't changed, if anything, they've become WORSE with multiple/COUNTLESS MG Crisis'! Pyridostigmine is the only reason why I'm able to move right now! It's so hard to make it to Drs appointment's because I get extremely anxious beforehand which makes me bedridden, unable to move @ all so ever since COVID-19 I've been without a Dr & I've just run out of my rx & have been trying to find out a way to get a new prescription without needing to leave the house so that I can regain my strength and go to a Drs office once I find a new Dr here in New Orleans. God bless you all living with MG & I 🙏 that you all have a better experience living with this waking nightmare of a disease! #MGStrong💪 #MGsnowflake❄️ #FUMG🖕

[@svtkilr]

I hope you are feeling better I have mg too and i thank god for pytdiostigmine for my treatment it has helped by droopy eye lid tremendously you would not know I have it’ I pray you get your medicine asap let’s beat MGs butt! Have a blessed day and stay in the fight! 🙏💪

[@Rodney-i5z]

I am 58 and was diagnosed last year . I am from the USA but now leave in Mexico . I had a rough time at first but my med now help a little . I am new to this and need and want advance and help !!! My main problem is my double vision and some breathing when it’s too hot out side . How do I seek help and where ? I don’t feel I am getting the best treatment.

[@justsaying9604]

When you get to the point of not being able to swallow, then it is time for IVIG. Heard this was a miracle treatment.

[@PATMCKEON007]

What is IVIG? Thanks!

[@omarsandoval6743]

@@PATMCKEON007intravenous immunoglobulin. Used this these past few days on a patient I had with MG. He showed rapid improvement after the first day.

[@RScottLaMorte]

@@PATMCKEON007 IVIg is intravenous immunoglobulin. It's a process when in 1 or 2 sessions you get an transfusion drip of donor antibodies. I'm not sure exactly how it works, but in most cases it decreases your body's native antibodies rate of attacking your muscles. It does not always work. I have had IVIg four times, it was mildly effective once, and totally ineffective three times. It can be very expensive. Without insurance it can cost $10,000-$20,000 and with insurance my copay was $2000.

[@oswaldogarcia4144]

​@@PATMCKEON007stands for Intra Venous ImmunoGlobulins

[@yvonnesmith2891]

Not necessarily. My husband was having monthly iVIG and had an upcoming hip surgery scheduled. His doc ordered a four day iVIG to “beef” him up for the surgery. By day three he was in pretty bad shape. The ER doc told us in another 20 mins and he wouldn’t have made it. Not a fan off iVIG for obvious reasons. The only thing right now is apherisis. Still do not know what will be next.

[@tonychurchman9382]

I have had MG for 9 years. Started with a drooping eye but within a week the eye closed completely. Living in Nashville I was lucky to be diagnosed within 3 weeks. My other eye closed on me while driving to work about a month later. Had to hold eye open to get off road and call for help. At one time I had 14 different symptoms. Main problems were eyes, chewing, swallowing , breathing, voice and talk not understandable, double vision, facial muscles and could not smile. Never had issues with strength in hands, arms, or legs. Was in Vanderbilt hospital 4 different times. Lots of infusions at Tn Oncology. Eventually at Vanderbilt I had 4 days of plasma exchange which help tremendously. Have been in remission for about 18 months but still have days when swallowing is an issue. Have had surgery on both eye lids to raise them and will have one eye done again next month.

[@tomikabrockman4363]

Can I ask what is the reason you are getting eye lifted again

[@TamilJungleStories]

where you done plasma exchange & what is the expense pls?

[@dineshkalita6692]

Is treatment is very costly? Please replied to me. Iam suffering from this problem since two years.

[@tonychurchman9382]

I had many infusions over first few years. Infusions helped along with prednisone. Got off prednisone as soon as possible as it caused major weight gain. Spent 3 different times is Vanderbilt hospital and the last time they did 3 days if plazma exchange. Since the plasma exchange I have been in remission for the last 4 years. What type of symptoms are you having? Finding a good neurologist that is familiar with myasthenia is critical.

[@tonychurchman9382]

When I did the plasma exchange my insurance paid it all as I was already above my deductible minimum. The first eye lift I had was needed to help remove the blurred vision as lid was drooping on the eye. 2nd lift several years later on same eye to get it to match the other eye.

[@Teenibash1969]

I am in Scotland. I was diagnosed with MG in July 2021 at the age of 52. Initially a droopy eyelid and double vision, I was prescribed Mestinon. I now have problems with swallowing, eating, speech, balance, falls and severe fatigue. I still have my job in the emergency services, doing shift work. My breathing is fine. I have not had a thymectomy, or plasma exchange. Just in the past 2 weeks (July 2023) my eye has returned to normal and is not drooping. I still have double vision.

[@aubreyshelton3217]

IVIG is a godsend coupled w mestinon

[@helenokezie1614]

I was diagnosed with Ocular Myasthenia gravis since April 2021 at that age 33. Please what should I do? I am from Nigeria they don't know much about this disease. Thank you. Help a sister

[@Teenibash1969]

@@helenokezie1614 you need to get in to see an eye specialist or optician asap. There are meds and prisms for you glasses which can help. Definately take medications. This is a disease you learn to live with and work with but it is scary until under control.

[@svtkilr]

@@helenokezie1614that’s what I have ocular Mg and mestanin has helped me get my droopy eyelids back to normal sometimes it triggers and they droop a bit but I take the good days with the bad I was diagnosed in 2020 and pyridiostigmine has been the Miracle medicine! I pray they get you on the medication asap till then keep your head up my friend and let’s beat Mgs butt! 🙏💪

[@svtkilr]

@@Teenibash1969well said bro

[@Matthouin]

I started with this in June , It was a mix of type two diabetes and myasthenia gravis , I had swelling at my ankles , high blood pressure blurry vision and some double vision from My left eye .. I also was very weak and was having trouble breathing . I only have one. Lung .

[@katk1958]

I cannot believe I heard him say there are, at times, some who cannot walk! I'm grateful mg manifests in weakness (debilitating) in my proximal limbs and trunc/hips, rather than my diaphragm. Sadly though, weakness in these body parts, rather than diaphragm, is not taken seriously since it's not life-threatening--one can still breathe. But, my quality of life is extremely poor due to being homebound now, and I'd require a motorized wheelchair with a car to accommodate it, to leave my house. Apparently, one needs a different neuromuscular disease diagnosis for insurance to pay. I refuse to go to a nursing home for myasthenia gravis, since I only hear how manageable it is, and how people lead normal lives with it.

[@vladislavfeldman6562]

Can go from woe to hoe in 4 days. Started with speaking swallowing problems. Within 4 years went to generalized mayathsenia (I thought it was arthritis) while being on IVIG for about 11 month, sudden breathing difficulty 4 days before IVIG. I thought no big deal 4 more days. 50 m outside of hospital had to stop get a nurse, got wheeled in to emergency, full respiratory failure.

[@palmajavier]

I wish more people knew that this illness is just a body toxicity, some of the "healthy" food you're eating is causing it and as soon as you stop it your body will start to heal. The best elimination diet is the carnivore diet, it allows you to remove everything carbs, gluten, veggies, while keeping all your nutrients coming from animal based only. Give it a few months and when you start bringing other food back you'll be able to notice what you can't digest, which btw might be a long list. I mean, you don't need to eat anything else than meat, but many people want to feel "normal" and want to start adding things back, but you certainly can live better without the rest of things thar are not meat.

[@distanndreart1344]

Hello, I have been suffering from severe sinusitis for exactly 30 years. I am Brazilian, I am 45 years old and today they are treating me at the HC Hospital das Clínicas in São Paulo. I had a relapse because I had COVID and ended up with consequences, but with a lot of effort and prayers, today I am partially with limitations in my hands, I want to have better treatment for a better quality of life, and I know that in the United States everything is much more detailed and they give the best treatment in the world, I would like to know if you have any form of an exchange of treatment, as I have a dream of visiting the United States and taking part in the treatment of myasthenia gravis, I would really like to be able to go and get treatment there, could you tell me if there is any way for me to apply for a scholarship? study, oh please, I really want a better quality of life, I await your response and thank you

[@Abhizeditz54]

Pls share the exercise video

[@frankalcala526]

Hello does this new medication work on congenital myasthenia gravis ?

[@meaurapchannel5241]

I am the patient of MG since last 7 months but after the diagnosed I am fine by the grace of almighty Allah and good doctors and proper medication. If the patient is not recvoring it should be considered on its care and medication and might be possible your doctor are not treating you properly so never compromise in any disease

[@TamilJungleStories]

where & how you got treatment, what is the expense pls ?

[@dineshkalita6692]

Where and how you got treatment.what is the expense pls

[@pls869]

I got diagnosed October 2021 when I was 14 I'm now 16 but getting that diagnosis was literal hell, it's definitely rare the doctors sent me back 5 times till I got the majority of muscle weakness throughout the course of spring and summer. The last straw was not being able to swallow and holding my head up. It definitely can get scary but I wish anyone and everyone with MG best of luck and you can get through it!! 🫶🏼

[@svtkilr]

Stay strong I move had it for 3 years and pyridiostigmine has helped me big time are you on it aswell? Stay strong kid you got this let’s kick mg in the ass! 💪🙏

[@elnazisedghi1947]

Know are you ok? My brother have a MG and my mom everything crying i wana that MG has the Can it be treated?

[@vladislavfeldman6562]

Iam now on my last month of chemo ( 2 respiratory distresses and 1 failure within 20 months) the mayathsenia seems to be back in remission. You will be put on chemo if you deteriorate.

[@tranquilizingreiki1659]

What if you have Medicaid in another state?

[@svtkilr]

Great ?

[@josephflora6472]

My ivig is octagam and I can't afford it.its 26000 every 3 weeks

[@elnazisedghi1947]

My brother has Mesenchymal Gravis (MG). Can someone please tell me if there is eye treatment or not? Please tell me if anyone knows

[@palmajavier]

Carnivore diet! This is food poisoning and if you remove all carbs, gluten, veggies, from your diet your body will heal just need to stop the poison from all those things. Research more on the carnivore diet and you'll see how everybody is putting their illnesses into remission by removing so much "healthy" stuff from their plate.

[@jphanks]

He doesn't mention seronegative MG. Interesting.

[@sangeetaDtripathi]

As we all know that MG is an autoimmune disease thus we have to suppress immunity for that Retuximabe is a great option

[@vidhyavidhya9148]

Mam i m from Tamilnadu. My dad had mg he was 73 years old. Mg was diagnosed past one month. Dr advised to go rituximab. Is it good as than ivig Or plasmapherisis. He had generalized mg. Pls reply

[@sangeetaDtripathi]

I was diagnosed with mg(musk antibodies). I was gives Ivig followed phasmaphorisis and immuno suppressant but they didn't work on me. Finally I was administered retuximab and my conditions improved.

[@vidhyavidhya9148]

@@sangeetaDtripathi thank u for ur reply

[@atlhap]

Why does he not ever mention that Soliris cost about $400,000 a year, and Vyvgart about $225,000 a year... UNTIL YOU DIE!

[@RiggedVedist]

wow. Does insurance cover most of that ?

[@mrb36b]

I am 71 and was diagnosed with gMG two years ago in 2021. I was on Soliris for 7 months. Currently I have been taking Vyvgart for the past 17 months. My Medicare covers 80% and my secondary covers 20% for both. I pay $0. I am very fortunate to have good insurance.

[@aldococai4865]

Is there a chance to get into remission?

[@aubreyshelton3217]

Thymectomy.. after that.. nope.. I had a thymectomy and didn't go into remission

[@JaneBezerra777]

​@@aubreyshelton3217 I had thymectomy when I was a child and it didn't get into remission . I have 24 years now, doctors wanted to do it again. I live in Northwest of Brazil, and it's very difficult to get a treatment here. It's very expensive, I had to stop the treatment. I lost my hope 😥

[@svtkilr]

@@JaneBezerra777you have had mg for 24 years? I hope you feel better my friend

[@nitindafda2405]

@@JaneBezerra777 i didn't go into remission after thymectomy..i am 32 years old now but still suffering

[@RScottLaMorte]

Yes. However it's not clear why or how some people go into remission. I have refractory MG which means it does not respond well to drugs. I had a paradoxical response to prednisone, which means prednisone made my symptoms so much worse. When I ended prednisone after one year I went into complete remission for six months and almost complete remission for 1.5 years. MG has now return and I am trying new drugs.

[@maribethcook2421]

Where is this doctor? My mother has this awful disease

[@robertmcadam2216]

This is a matter of fact presentation which is worse than useless. Typically doctors do not address the cause and alleviate the symptoms - There are options with diet and supplements that assist in dealing with this and don’t cost $100,000’s. He would be the very last person I would see. I have had this condition a while now without realizing, it was misdiagnosed unfortunately - it got worse - but hey, it’s a relief to know what is going on. I upped my vitamin D/K2/Zinc/B1 ( D2 - 50,000 units daily😊) I stopped feeling exhausted in 1 hour. Minimal cost and easy. I don’t know if you get frightened to swallow as I do - chewing far more these days. Might look at 1 blended meal a day. Walking more and hope to learn to manage this, the exhaustion is horrible and my heart goes out to all of you who are in worse shape than me. Cut Out Carbs intermittent fasting and keto works, it’s cheap if you slow cook the cheaper cuts. See Dr Berg on auto immune diet. Wishing you all the very best. Bob❤