Behind the Mystery: Myasthenia Gravis

[@momg49]

This is my story. It took years to diagnose just what I had. Multiple tests and hospitalizations before they gave me the drug to counteract the symptoms. It was dramatic. I could talk, breathe, hold my head up and stand. After many tests came back negative - I finally had the answer. At one point I was told I was crazy and needed multiple visits to a psychotherapist. The therapists kept saying I was fine. It took 9 years, 9 years!!. I have my symptoms break through but at least I am being treated with respect when I go into the hospital with issues.

[@katsato3118]

Did you have negative tests for achr and or musk? My neuro tested for achr which was negative, then emg came back with vague mild myopathy abnormalities then sent me to a shrink 😄 Shrink said it's not in my head and I'm so lost. I'm glad you got answers!

[@momg49]

@@katsato3118 I had negative everything. The only thing that worked was to put me on mestinon to see if it worked. Holy Cow. It worked really well. That is 6 neurologists, 3 psychiatrists and a psychologist. The psychiatrists and psychologist were wonderful. I have moved from Michigan to Florida. My last two break throughs were supported and I was encouraged and validated after almost 30 years. Do not give up. Please do not give up. I have moved from mestinon to Celcept (a new drug to treat myasthenia) and am doing really well.

[@katsato3118]

@@momg49 your story is encouraging! Thank you for your kindness and taking the time to respond. I'm only going on 6 years and feel so robbed of my life having changed so fast without definite answers and one misdiagnosis after another. I have a referral to a movement specialist for foot drop and dysarthria and am hoping he will be more knowledgeable than my current neuro. You are appreciated 💛

[@terriarnold4009]

My brother just told me today he was diagnosed with this. What DRUG are you speaking of that counteracted your symptoms??? Thank you kindly!!

[@momg49]

@@terriarnold4009 I started with Mestion and was on it for years with breakthroughs about one to two times a year.. Now I am on Cellcept. It is normally used in organ transplants but with Myasthenia you take a much lower dose. I have been happy with the outcome. The medical profession today is much more informed about Myasthenia than in days past. Good luck to your brother.

[@daryanikitenko5660]

Hi i am 26, I was finally diagnosed after 5 years, I am scared for my future but i am glad the problem was at least identified, and i can learn moving forward.

[@stephen10295]

My heart goes out to you, I suffer with general, it's destroyed my life, now housebound pretty much, wheelchair and mobility scooter. God knows how many meds I take daily. You have described me perfectly and thousands of others.

[@JessicaMier-ew2qg]

okay my dad recently got diagnosed w this disease I am amazed by how LITTLE Doctors truly know. Its 2022 the more I research the more i find pple with this disease. This should be thought more at medical schools and not just overlook this disease as well as scientist should invest time and money in researching this illness. Alot more should be done, I hope the best for everyone who is going thru this and have gone through this disease it is not easy.

[@jacobkhulu3346]

Was diagnosed with MG at the age of five. I had to relearn to walk again as a toddler. Am now 29 years old still battling with fatigue mostly. The diseases changes your social life, your physical life and employment quality. To think the only support I have is myself cause every person in my life has no idea what MG is how severe it is and most times am accused of making things or making excuses😂. Currently MG is affecting my quality sexual intercourse. Had to change certain habits to manage that also. MG will humble you😂

[@brazenbige52]

I’m soo sorry I pray you get better have faith!

[@clc477]

You aren't kidding I've had it fir 20 years diagnosed for last 10 years almost died several times but still Noone understands how terrible it is I've struggled really bad when in remission I feel pretty good but out feel terrible it goes from year felling good to a year feeling bad and have no idea to this day what makes it change I've tried everything had plasma forsis but worked only fir a few weeks

[@elenaandrew8414]

@@clc477 praying for you

[@clc477]

@@elenaandrew8414 tu it's been a rough 6 months im a butcher and was in remission for few years had business going well and welp u know boom can hardly walk and talk some days how is your mystenia going don't get to chat with many people there's not alot of us

[@elenaandrew8414]

@@clc477 me the same, so sorry and understand

[@mariosfilippou4147]

I am 46 years old and i have Myasthenia Gravis since 2015!! It took as a year for the diagnosis!!! Every day make exercise and when i feel tired i rest!!! Be strong and live your life everyday!! Don't let MG to stop us leave our life ❤😊

[@kinsleycook2379]

I’m 24 and got diagnose at 23. Went from a really fit person healthy diet to not being able to do anything on my own. It’s been just over a year since I’ve had MG I’m back in the gym but there are so many days where I’m just ready to give up. Im on prednisone and the goal is to get me off of it. I’ve been on steroids for over a year and im scared to come off them as I depend on them to do everything I do.

[@lukefr.987]

how much mg of pred are you on? it's important to stay on a low dose for long-term if it works. people with rheuma take pred for 10 to 20 years (under 7 mg)

[@Snarkapotamus]

I got oMG first and went to a couple of eye specialists to figure out the diplopia. The last one I went to actually asked me if I had any other symptoms. I said yes and he immediately said he'd get me a referral to a neurologist. 5-months later I had my first appointment and it took her all of 5-minutes to make the preliminary diagnosis of gMG. Did a chest cat-scan and blood test and sure enough, that's what it was. My biggest issues are still with my eyes. I can go months with them being mostly okay and then WHAM!

[@clc477]

20 years of having this its very hard I've truly only felt good for maybe 5 years of this I tell people I live my life a quarter mile at a time cause if I go into remission I live the best I can for that moment cause it comes and goes

[@TheBalancingActTV]

Your strength is recognized, thank you for sharing your positive outlook ! We wish you the best at The Balancing Act ❤

[@clc477]

@@TheBalancingActTV yea its a rough one alot but put to u this way I'm a butcher and a working man I've suffered alot but never give up ill die before I'm np contribution to society and my family just the way I feel fight fight fight

[@ronforprez4623]

I have it to bro, very difficult to deal with knowing there is no cure for it but I just pray like my mom tells me and ask God to help me with it

[@globalsongstv]

You're heal in the name of Jesus

[@organickaren]

Thanks Teresa for sharing your Story. I am 71 & have had MG for 4 years now. An Organic mostly Raw Fruit & Vegetable Diet with intermittent Fasting has really helped. However, I still have Crises. I am on Medication & would love to hear what your daily Medication routine is? All the Best to You & All Else out there. Thanks. Karen. I live in Australia.

[@sd-gx8wj]

Kriz belirtileriniz nelerdir

[@realographystudios7035]

I was diagnosed by the USMC at age 19. I was promptly given a medical discharge. That was in DEC 1969! Today I am still fighting with them to give me my disability rating! More importantly, has anyone else had really bad trouble trying to take Mestinon (pyridostigmine)? I get horrible heartburn, and incredible over stimulation of my salivary glands, such that saliva literally “runs” in my mouth so much that I have to hold my head over the sink, etc. I’ve tried taking it many times over the years, but I just can’t tolerate it.

[@tjp7927]

It gives terrible diarrhea. Didn’t help

[@Snarkapotamus]

It's the bromide in the pill. Try taking a half a pill at a time...

[@sandrapetty]

I have Myasthenia gravis also diagnosis in 1994. This is my story.

[@rfifita]

I was just diagnosed with OMG. It's so depressing but I'm trying to work through this and learn. It's hard but this becomes the new normal

[@nikkisunshine8849]

Try keto it takes the inflammation out your body lots of vitamins

[@aldococai4865]

@@nikkisunshine8849 whats it keto?

[@elenaandrew8414]

How are you now?

[@starcorpvncj]

Thank you. A brillian video. Yes. It's all about the MANAGEMENT.

[@lucilleverrille54]

At least the attempt.

[@Snarkapotamus]

This disease is so rare that many doctors/np's/pa's can go an entire career without seeing a patient with it. So, it's not surprising that people get strung along for long periods before being diagnosed. I was told my only issue was a Vitamin D deficiency! Which, I knew was complete BS given my symptoms.

[@TheBalancingActTV]

Wow. We are sorry that you are going through that.Thank you for sharing. It is so important that we bring these things to light.

[@SusiWolfStoryteller]

I was diagnosed with Myasthenia Gravis in 2018. It's a tricky disease to live with. But I keep going regardless.

[@maqdisalimaane5061]

Same. Hope you’re doing fine

[@dylanwhite991]

my dad just got diagnosed, hope you’re doing well.

[@shanaeselby4365]

Same i been diagnosed since i was 16 now 31 its rough but if u dont have a healthy diet plan and keep up with your treatments it can be alot

[@dylanwhite991]

@@shanaeselby4365 so nice to hear that, i don’t know you but you’re an inspiration to many!

[@shanaeselby4365]

@@dylanwhite991 so tell dad he is going to be just fine. One day at a time and no time for giving up.

[@countesserzabeth1812]

Diagnosed last 2013.. from tej Philippines,I am a teacher Generalized MG, my thymoma have removed.. the symptoms lessen but still im latching on mestinon

[@lukefr.987]

you need immunsupressive medication

[@jennyalonso1318]

May I know who is your doctor and what hospital?

[@allkindsamusicchick]

I have not felt right since last late February, then Covid hit. I've had a variety of challenges over the course of the year. A bit worried as my grandmother developed Gillian Barre in her 60s and also had nerve problems throughout her life. My stress levels have been over the top for years, although I have never been on any medications, and I'd like to keep it that way. The muscles around my left eye has been spasmodic for the past 3 days after a highly stressful topic was brought to light once again.I pray this goes away.

[@datgirl_zaria4916]

I’m having problems with the eye dropping from mg it’s aggravating to me bc I can’t even go to school and be a normal girl bc people would ask me questions about it and I would literally cry and I’m 15 with it I got it at the age of 14🥺🥺😞😞

[@zindagikimehek8866]

I have the same eye drooping MG. Surely I m much older than u. Taking meds has really helped. My eyes don't droop anymore. Pls see a Neurologist who can prescribe it for u. Hope u feel better.

[@datgirl_zaria4916]

@@zindagikimehek8866 thank you so much I will 🥺🥺💕

[@DeeDee-di2te]

i had the same issue. i was diagnosed when i was 12. i did a treatment called IVIG at the hospital and i havent had a droopy eyelid since

[@tjp7927]

See a plastic surgeon

[@dedradenicejordan8029]

I was diagnosed in 2006, it was confirmed it was Musk MG

[@elenaandrew8414]

Sorry Debra

[@chantalboodoo5707]

Hi my name is chantal am 24 an from Trinidad I jus found out I have MG bt apparently I've had it for like 2 years nw ,I've been to doctors before an the doctor's keep telling me nothing's wrong so nw its 2 years going .

[@ronforprez4623]

Yeah there is no cure for it, it's very rate that's why they are clueless, im 15 I turn 16 in May but I was diagnosed at age 7 but I pray almost everyday for God to help me

[@mustafarafatzaman2404]

Hi Teresa, what meds are you on and at what doses?

[@lucilleverrille54]

Her medications and treatments are exclusive to her. Your doctor has to find what works for you

[@debbievalentine5909]

Thank you!

[@atlhap]

There are not "two forms of" MG. There two "classifications" based on the severity of the disorder.

[@lucilleverrille54]

Some people only have ocular.

[@pamelah3739]

I was hoping she would tell us what foods and supplements she's taking. Ugh!

[@maribethcook2421]

My mother had this disease she’s 77 and was just diagnosed when it affected her diaphragm and she was vented. I just went her back! Who are good doctors?

[@robbrien8506]

Why don't they just start with the immunology blood tests if MG is suspected?

[@mr939]

Hello

[@christineabella8121]

Hi im from philipppines.. my son now has a ocur myasthenia gravis at the age of 2.. i feel scared.. i hope someone talk to me here..

[@patricialinda4711]

Hello how is your son, how is he feeling?

[@BisdakFoods]

Hi taga pinas sad ko i was diagnosed also MG im scared i prayed alot i am now taking lots of meds.god is good i can swallow now hope getting better soon and heal all the sick

[@BisdakFoods]

Taga asa ka ph.?

[@lynloveskevin]

Hello po, how’s your son doing? I have MG too been diagnosed since 2016 . I am from Cebu po. I hope you son is getting better.

[@lynloveskevin]

@@BisdakFoods hi, taga asa ka sa Pinas? I have MG too.

[@cherylcarlson3315]

A year on mestinon improved muscle strength, swallowing,speech, balance, stopped blurred vision. This last Neuro says double sero neg,sfemg is normal by her. Dog very protective way more so than doctor

[@lukefr.987]

you need immunsupressive medication or it will generalize even if it takes years. talk to a mg expert, mestinon is only a symptomatic treatment

[@cherylcarlson3315]

@@lukefr.987 Thank you. It has been affecting respiration,swallowing,walking, severely for years so is generalized. That last neuro claims to be expert in MG and said can't be MG because she is expert... never mind breathing, walking, vision , strength has gradually improved on mestinon. She claims this is placebo effect. I am RN ( disabled) Will see a new neuro this month. While crazy americans won't get vaccinated, isolate or mask, I am hesitant to use immunosuppressives.

[@lukefr.987]

I had a 60 to 70 % improvement in 6 months on 10 mg steroids without using mestinon anymore.

[@emilymizzell8473]

Same incredible experience with dog. He knows....has been staying by me and sleeping outside bedroom door for 2 years. I am newly diagnosed with ocular and seronegative MG. Finally! I don't know which is worse....the disease or the lack of care, interest, and respect by the medical community!

[@cherylcarlson3315]

@@emilymizzell8473 Thank God for the dogs. Am now triple sero negative but mestinon keeps me up until get respiratory illness,then dog wants me in bed. Glad you're watched over too

[@patrickaidoo1125]

Hello was diagnosed in 2012 am now 37 and is aggravated now. Any alternative measures to live a normal life?

[@ronforprez4623]

I'm 15 now I turn 16 in May but I was diagnosed at the age if 7 and as the years passed by it went from ok to a disaster

[@ronforprez4623]

Pray and ask the lord to help u in Jesus name🙏🏾🙏🏾

[@patrickaidoo1125]

@@ronforprez4623 prayer is the key, trusting God is the answer. Am getting better since I started praying

[@sassysaz3467]

@@patrickaidoo1125 diagnosed in 2013. Well I read somewhere to try the keto diet and intermittent fasting. I’m willing to try, I’m tired of it. Hope you are feeling better.

[@patrickaidoo1125]

@@sassysaz3467 I'm getting better now thank you. I have added vitamin D supplement to my diet I think it helps.