My son was born with congenital myasthenia graves and doctors had told us that there no medication for this disease, will like to schedule an appointment so you can see my son.

Thank you! I was diagnosed with Myasthenia gravis 2.5 months ago and I have only been able to see a neurologist once since discharge from the hospital. He was leaving the practice and was not committed to developing a treatment plan. You have given me a greater hope and understanding.

My partner has had significant improvement with avoiding processed foods, the Carnivore diet and supplementing with HIGH doses of B vitamins especially B1 (which tastes awful). God bless!

Learn Quigong... I have Myasthenia Gravis... And it DEFINITELY HELPS.. DO NOT CUT OUT YOUR THYMUS GLAND!

What therapy you segested sir

i was first very symptomatic and diagnosed in Nov 2021 with ocular, it rapidly passed thru bulbar to general. i was 65 and working full time and still am but struggling. i refused predisone and until i got a new neurologist nothing other than mestinon was on the table. I was willing to limp along with that rather than risk steroid damage. i just got approved for vyvgart. i am on cycle 1 infusion 3 or 4 weekly. i have had significant relief. how long? don't know. i am hopeful that i can keep my job and keeping having hopes and dreams. we will see.

@Snarkapotamus

Жыл бұрын

I thought it was once a week for 4-weeks and then every 72-days. Stuff's pretty pricey. Last I looked, it came out to about $625K a year...

@helenokezie1614

10 ай бұрын

I was diagnose with Ocular Myasthenia gravis since April 2021. Pls what should I do? I am a Nigerian they don't know much about it

@cyrusjulian187

Ай бұрын

As a backup, have you looked at the Coimbra protocol? Dr Berg has a video here on youtube about it (search Dr Berg myasthenia gravis) where he talks about taking 10k iu of vitamin D, if not more. I'm testing it out now for 2nd day while on prednisone and mestinon. Yeah the steroids suck

Ive had this for 7 years...

What is the cost for this option?

How common is remission without surgery. I was diagnosed with MG and spent 6 days in the hospital. Two days unable to swallow my own spit. Then I don’t know how but it seems to be in remission. Don’t take any steriods or any meds for it. Took a few doses of IV IgG. But that has been over a year.

@cyrusjulian187

Ай бұрын

Thanks for bringing up this topic. I'm faced with the same dilemna right now. Facing a thymectomy and barely able to even sip water due to MG. Took 5 days of the IVIG which seemed to help but can't deny the steroids did help my drooping eye pop up after being droopy for a year. Ideally was hoping the vitamin D would take care of MG and keto diet the thymoma but I probably started too late

Can food be cause of myasthenia gravis, like ceolic disease which is a auto immune disease like MG

@castielamossnow150

2 жыл бұрын

I also have these problem i only just discovered this recently

@janeklota1144

Жыл бұрын

Glory to god for healing me from lupus through doctor Eseigbes herbal supplements on KZread channel . Thanks doctor for your kind gesture sir

@Snarkapotamus

Жыл бұрын

I absolutely believe allergies (your body's immune system overreacting) could indeed be a trigger for MG...

I was diagnosed January 2022. I'm currently only on mestinon and to be honest it only helps a little for a little while. I have trouble eating swallowing and at times breathing. I also stay super weak at times I can't even get up from the restroom. I need help bathing and getting dressed on a daily basis

@patrickaidoo1125

Жыл бұрын

Sorry to hear that it will be well. I have been taking vitamin D supplement and am seeing some improvements.

@arunasankar1893

Жыл бұрын

@@patrickaidoo1125 daily how much dose to take vitamin D sir

@patrickaidoo1125

Жыл бұрын

@@arunasankar1893 1000 iu daily

@rimjimborahh3873

Жыл бұрын

@@patrickaidoo1125 u too have myasthania? My mother is also a patient of generalized myasthania. I don't know what will help her in improvement.

@patrickaidoo1125

Жыл бұрын

​@@rimjimborahh3873 yes I was diagnosed 2012

I have mg since 10 years I used 5 mestinon every day my doctor can't suggested me to surgery but I want I feel fatigue nd weakness but no one give me a sanciar idea plz help me out dear

@patrickaidoo1125

Жыл бұрын

Same here 10 years but was not taking my medication regularly. Just took them when I felt worse. Is there a way you can DM me?

@dasigirl8416

Жыл бұрын

@@patrickaidoo1125 than how you can manage ur daily routine without taking regular medicine?

@patrickaidoo1125

Жыл бұрын

@@dasigirl8416 I cut back on most of my activities and had more rest which meant make less or no money. But God been so good I'm still here and hoping for a better treatment.

@cyrusjulian187

Ай бұрын

@@patrickaidoo1125 Have you all looked at the Coimbra protocol? Where you take large doses of Vitamin D?

Hello I have congenital myasthenia gravis for almost 20 years. How or who do I call to schedule an appointment. I want this medication asap. I'm tired of pyrodostigme 60 mg 2 tablets 4 times a day. I feel like I just take it for nothing I'm still weak I can't walk this pills are useless. Please doctor give me number to call.

@brandilowe1916

Жыл бұрын

if they offer you vyvgart, take it. there are side effects and its not going to fix everything but just for the joy of the relief i have had in the first few weeks, wow. i forgot how good 'normal could be.

@frankalcala526

Жыл бұрын

Hi Brandi thanks for the reply. I called my neurologist n he said this won't work on me. Mines a congenital myasthenia gravis 😔 but I don't understand why they won't just try it on me n just saying that medicine won't work. So sad. Brandi did u receive this medication n what did you feel. What kind of myasthenia do you have. There's different kinds

Compliment inhibitors - 2017 Fcrn inhibitors - 2021