Myasthenia Gravis - My Symptoms
Вставка
- Опубліковано 31 гру 2013
- 01/01/2014 - This video shows how the symptoms of Myasthenia Gravis affect me. I was diagnosed with MG when I was 17 years old and have been trying to manage my symptoms in various ways since then. I am now 23 years old and have recently seen a relapse in my symptoms hence why I have decided to create this video to show how it impacts me. It shows them at their worst, which impacts my ability to speak and move my facial muscles. It also makes me sound upset and have a nasal voice as a result of weakness in my soft pallet and other facial muscles. The reason I am posting this is to help raise awareness about the condition as it is often difficult to describe to people who have not come across it before.
Hi All,
It has been a while since I was last on here and I want to thank you all for your support. I want to give you a quick update. Since this video I have made some big lifestyle changes to try and help my condition.
I left my stressful job in London and I have trained as a personal trainer. I may not be the strongest person or able to run the furthest on some days, however I believe the better shape I can be in and the stronger I can make my muscles the better chance I have when my symptoms weaken. I also find that exercise helps to boost me and decreases my symptoms for a few hours afterwards.
I have also started training as a nutritional therapist and will qualify in July 2018! I believe we need to treat our bodies with respect and avoid inflammatory foods. I have recently adopted a largely plant based, whole foods diet, avoiding inflammatory foods like meat, dairy, processed food and gluten. This has really helped me and allowed me to decrease my medication.
I still have a way to go but I can honestly say that day to day I can control my symptoms with only slight facial weakness now. I have lowered my steroids and hope to eventually come off my medication, only time will tell! I no longer have plasma exchanges every 4-6 weeks and take mestinon occasionally if needed.
I know that this change is due to my lifestyle changes, decreasing my stress, looking after my body and sharing my story with supportive people.
Please don't give up hope and try to remember lifestyle changes are in your hands and they can really support conventional medical treatments!
I will give you another update soon!
Love, courage, strength and determination - we can beat this!
Lara
Xx
Coenzyme q10 100 mg daily + vitamin D (lack of sun ir northen countries) + Bruno Groning (regelungan was the word I was interested in: www.bruno-groening.org/en/healings/physical-healings/341-nerven/muscle-weakness-myasthenia-gravis/289-healing-muscle-weakness-myasthenia-gravis) + Use of H2o2 en.wikipedia.org/wiki/Hydrogen_peroxide. HBOT can worsen everything, breathing problems started after the second try :-( - it is my experience with HBOT.
What an inspiration! This is such a great message of empowerment. I'm a student of physical therapy and I agree that lifestyle is the first step towards improving health conditions of all kinds. Best of luck Lara! Do you!
NAC helps for a while, but makes problems with lungs: selfhacked.com/2016/05/27/top-25-science-based-health-benefits-n-acetyl-cysteine-nac/. Gluten-free, dairy free. I tried natural whey yesterday, it worsens.
LaraPepper1 Hey Lara! So pleased to see you after so long. I was really worried for not showing up here. May Lord has his mercy on you. I wish I was surrounded by the likes of you.
Lots of love and prayers from Pakistan.
Dear Lara.. inspired by your story. I was diagnosed in 2016 with the same symptoms. My thymus was removed 8 months ago and we are seeing a big improvement. Im still receiving IVIG every 6 weeks and would really like to improve on my diet. Ive recently started exercise with a biokineticist. Do you mind telling me more about your diet and exactly how you would eat during the day. My email address is cr.ockhuizen@gmail.com. would love to hear from you. God bless
In April 2011 at the age of 15 I was moving houses and noticed my arms were very weak that day, didn't think much of it the next day taking a book shelf up the stairs my legs suddenly gave out. As the weeks passed my arms became quite limp and also my legs, the my eyes started to drop and my tongue and mouth became almost paralyzed . Eventually one night about a month later I couldn't talk at all so I went to the ER, that night I was told I had myasthenia gravis. I was put on mestinon at first for a month which seemed to control my symptoms untill I was taking 4-5 every few hours . Then June 4th 2012 I had a CT scan which revealed an 8 pound thymoma. I had several plasma transfusions before it was removed on July 7th. The symptoms of my MG vanished for a few short months after surgery then slowly came back with a vengeance. Usually as I'm sure most people who are reading this MG targets smaller muscles or 1 group . When my MG came back it was very hard to keep sub sided with mestinon, I then began intravenous immunoglobulin once a month which made almost all symptoms non existent as long as I didn't strain it work too hard. My IVIG was then put to every 2 months, then 3, I went 6 months without it and now it's been a year since I've had an IVIG treatment. I still take very small doses of mestinon daily but that keeps my MG very well managed seeing as it now only affects my mouth when I go 12 hours or so without mestinon or my arms when working out at a gym. Thank you so much for reading my story, looking forward to hearing back and I wish that all people with MG find something that helps with this horrible disease/disorder.
Carter Blake hey! I really appreciated reading your story! it gives me hope I one day too will be able to get off Prednisone. have you ever been on Prednisone? I got my thymoma removed in August 2016 but after 6months I still had symptoms....expecially my harms and legs...so weak....i m so glad you are doing well almost without meds!
Hello! My family member was diagnosed with MG. I am a bionutrient researcher and analyst and did a soft tissue analysis on my family member and found a chemical mineral pattern which could cause neural issues. I also found that many individuals I have interviewed who relapsed expressed symptoms consistent with subclinical adrenal fatigue. I am looking for other individuals with MG that would be willing to do a lab screening? Please contact me at Nutrient Deficiency Analytics. support@nutrientdeficiencyanalytics.com
Hey, I’m currently in hospital, waiting for surgery. Did you eventually recover from myasthenia gravis? I’ve got mixed emotions regarding the surgery 😩
How are you now ?
I too was diagnosed at 17, and am 49 now. I see my face as I watch this video and I hear my voice in yours. You are NOT alone. Only those of us with MG can understand. Hugs to you. Stay strong and rest often...never give up.
Your beautiful! It takes a lot of courage to show the world what this disorder is like. I'm a nursing student and I'm studying this topic. Thank you so much and I truly wish you the best.
Thank you Lara for sharing this video , I am a medical student and it was very beneficial for me to understandvthe nature of this disease , I hope you get well soon and get rid of this disease dear 💜
Thank you for sharing your problem for the benefit of others . May your symptoms get better :) all the best
Hi was diagnose at age 9 got my thymus removed now I am 28 with 2 kids . Living my best life still have symptoms but not as before. My first years I lived in hospitals with tubes down my throat. And I became so depressed to the point I wanted to die this illness is no joke and alot of people dont understand the difficult things we go threw mentally emotionally and physically. But have faith you will get better
Laura, thank you so much for sharing. I have an immense amount of respect for you. You demonstrated courage, bravery, strength and humility in this short 4 minute video. I encourage you to continue to fight and be the strong woman I see in this video. Thank you for opening up my eyes and being vulnerable and strong. You will be in my prayers :). You are amazing!
Thank you for sharing your experience with MG. Praying for you!
I have been dealing with MG for over 25 years now. I was 13 when I first started showing symptoms. Just know that we all can lead normal lives. I am married to an amazing woman and have 2 young daughters. We may have to push a little harder than most. But it doesn't stop us from getting to where we want to go! Good luck and stay strong. :)
Thank you for posting your video.
It is difficult to explain!
I pray you're better.
Thank you so much for sharing this with us. It definately raises awareness about this condition. My thoughts and prayers are with you!
Thank you for sharing your story, Lara! I just became a Doctor of Physical Therapy and words can't describe how much I hope you get well! Stay tough! You seem like a very strong young lady.
Thank you for bringing awareness Lara! You are an inspiration! Wishing you the best.
Thank you so much for sharing this! My father is in the middle of tests for this, it is very scary. They have not officially diagnosed him but he is showing all the major symptoms, I'm hoping and praying for you and all those dealing with MG. I love how everyone is helping each other and sharing their stories, gives me hope for my dad!
Hi Laura,
I just wanted to say THANK YOU SO MUCH for posting this video. Last year I was in a pharmacology course, while struggling with unanswered and undiagnosed symptoms, and my classmates came across your video. They were looking up information on cholinergic medications when they saw you and your symptoms and called me immediately. Within the first 10 seconds of this video I saw my own symptoms and mannerisms in you and I completely broke down. The next day I had my AChE levels examined and they were quadruple the normal values. A friend had tried to film my speech a month prior to viewing this video and it was too difficult for me to last more than 3 words. I literally do not think I would have been able to finish my accelerated nursing program if I did not find your video when I did. THANK YOU. THANK YOU. THANK YOU.
Hey Lara! Thanks so much for sharing! I am revising for nursing exams and I find it really find it helpful when I find videos like yours made from people that actually live with conditions. Best of luck :)!
Sending you love Laura, I am so grateful for you sharing. I am in the beginning of my journey and this is so helpful. Hugs, I hope you feel much better.♥️
I hate this disease more than anything in the world, you're amazing and very beautiful, Lara.
You are so brave and strong for sharing this. I am studying medicine and we are currently learning about this disease and I really appreciate you discussing your symptoms. It is sometimes difficult to just read "text book" cases and seeing images of the neuromuscular junction without ever seeing real patients that live through a disease, so again thank you for this teaching moment.
Thanks for having the courage to post. Before I got diagnosed about 3 years ago I thought I was going crazy with fatigue, slurred speech etc. After diagnosis (and while waiting) searches for MG did not show a lot of real world experiences. Also message boards for MG showed symptoms that doctors did not necessarily agree with but that others with a confirmed diagnosis stated they had. So the more people that are willing to share the more the rest of us learn. Best wishes.
You are amazing for sharing this with the world, stay strong because there is no other option for somebody as brave as you. God Bless You!
Thank you for your support I really appreciate it. Lara
LaraPepper1 You are a beautiful girl Lara. I hope for a full recovery for you. Im a Respiratory student graduate and came across your case. If you ever come to Rhode Island, let me know!
You made me cry, allah help you honey
I hope some day will be no one suffer from any kind of diseases 💔
I am 22 and have had this disease for nearly 5 years now. My symptoms are more mild than yours, my walking is mostly affected but I've now experienced troubles with my tongue and swallowing also. It is a really scary disease because there is no cure. You can only do what you can. No one understands it, not even my family have the patience to help me with this…I don't feel supported … I had my thymus removed last year and now I'm due to start a small dose of steroids. I'm worried about the steroids. You are a brave girl and we all support you x
Hi Clare-Alana, Thank you for sharing your story with me, I know it can be a really scary disease and it can be hard for others to understand. I too am worried about steroids and using them long-term. I am trying to be as healthy as possible as I find that doing exercise actually helps my condition. I am also trying to cut down of high fat and sugary foods to try and keep my energy levels maintained. Steroids have helped my condition to some extent, however my goal is to try and get to a point were I can take a minimal dose or not at all! I will keep you updated with what I find. Good luck, stay positive and strong, and I hope your condition improves too, L x
Clare-Alana Ford im on steroids too .. was scared at first but it hasnt chnaged me in any way . i had acne due to high doses but they went away when my neurologist reduced my doage
Hello Clare-Alana, I have had MG for 7 years and have been on as high as 100 mg prednisone, now down to 10 mg. In 2011 I had a crisis and was hospitalized for 35 days, 22 days in ICU, two weeks intubated on life support. I urge you not to be frightened, but stand up tall and face this head-on. I support you 100%! We will beat this thing within my lifetime (I'll be 74 tomorrow). Suck on ice chips to regain tongue strength. It is for young people like you that I work so hard raising money for research (MG Walk team Tom's Rockets - Blast Off For The Cure!)
Thomas Larsen My parents tend to believe only MG sufferers over 70. Dad is 87. ... Have you found anything really helpful that doesn't cause more side effects? Have you cut way back on sugar or anything in your diet as well?
Thank you all! I have found myself in hospital n several occasions and did incur a crisis where I needed IVIG but managing better now xo Neuro says surgery looks like it hasn't helped unfortunately so onwards xo Hope everyone is doing okay
Hi Lara
Just watched the video, I know it's old now but really does show what impact MG had on you - I hope the treatments you're getting now help, especially the plasma exchanges - Look forward to seeing your dad soon and getting an update - Take care, all the best with your life and business endeavours!!!
Thank you Laura for sharing your story; I always wondering sign and symptoms of MG to drown in my mind but seeing your video make it clear. God be with you and you will be better soon; please share us your progress.
Hi, I also have MG. I had it for 14 years. Your symptoms remind me of my first 5 or 6 years dealing with MG.
Stay strong.
Dear Lara, thank you for sharing your story with us. xxx
Thank you for sharing your story. I wish you the best.
Good luck for your treatment! Thank you for sharing this with us
OMG I feel to the floor crying 😭 when I saw your video. Thank you. For over 9 months now I haven't been able to talk. Tomorrow they start treating me with medicine and I just want to talk again. Thank you so much.
Lara, you are not only brave, but also incredible. You are amazing and wonderful for sharing this. I'm praying for you to get well, and so proud of you! Keep your head up, dear. May God bless and heal you as soon as possible 🙏
I wish you fast recovery ,, sending you my prayers
I appreciate you sharing this video for educational purposes. God bless you and your family.
Thank you dear Lara. You are a brave young lady.
Wow thank you for sharing this, I am a nursing student and this really benefited my studies and gave me a new perspective on this disease. Thank you for helping me understand this
Thank you so much for the above video. I have MG and I was unable to speak for 15months, on a ventilator and feeding tube. By the grace of God I came off all of it. It's been 3 years remission. The symptoms are coming back. My speech is slow, quiet, nasal and neck muscles are weak. My breathing thus far is fine. My swallowing is weak and sometimes come back thru the nose. Mostly liquids. I get tired of eating or swallowing I should say. I don't sleep we'll at night. My left eye is very weak and the double vision is appearing again too. I take cell cept and prednisone on occasion. I don't like to go around people when my symptoms are active. It's quite depressing.
Oh laura that will stuck in my mind forever you are brave .
Hi Lara!! My classmates and I are studying for comprehensive exams. We are trying to understand the symptoms of Myasthenia Gravis and your video really helped!! Thanks!! Be blessed and we pray your good days out number your bad days!!!!
You are brave, thanks for sharing your story, you helped a young physician get more educated today about myasthenia gravis.
Thank you Lara for sharing. I said a prayer to you. I hope you feel better.
Lara, we are listening. We hear you. We feel you. We understand what you are going through. I myself am suffering with Bells Palsy. I know it must be so scary not being able to swallow.After coming down with Bells Palsy and still having it, I began researching auto immune diseases. This is where I learned about MG. I had insomnia for the last two months. I have spent hundreds of hours reading. The body is a wonderful healing machine only if you put it in a state of healing. Diet plays a large role in this. Drink nothing but water. Propel vitamin water is great. I am not a Dr., however, all of the hours of reading comes to a generalised outcome. You will get better to a certain degree. Hang in there. You are beautiful with or without this disease and we hear you.
Thanks for making this video. I was diagnosed with MG at the age of 6. I am now 13 and I still have. I am glad I watched this because not many sites have videos and such because the disease is rare. Thanks again. 😊
Lara, you are a strong and very beautiful young lady! I wish you the very best in your recovery!
I don't know how to thank you for sharing your story. I'm a physiotherapy student but have never worked with a patient with Miasthenia Gravis. Now, I can clearly see what problems you might suffer from. Many thanks again brave lady.
Thank you Lara I'm a doctor studying for exams, this very useful to learn to recognise MG. All the best.
Thank you for sharing & thanks for being courageous enough to share it
I hope you will get well soon darling
Thank you for this. I'm sure this wasn't easy to make, but this was really educational for me. Best of luck!
Thank you for this video. I needed my friends & family to see MG in action! Hopefully there will be a cure within our lifetimes.
Very helpful video. Thank you for sharing. Videos like this help me with my studies for school to better understand the symptoms of this disease. Thanks again!
Thanks for sharing. I feel for you and I wish you all the best! You are such a strong and beautiful person. Never give up! I hope that things will get better. I send you a lot of love.
Thanx for your story. I was diagnosed with the disease 10/24/14. Its not easy to cope with, especially being such a rare of a disease not genetically transferred. Knowing that I'm not the only one lightens the load a little. I had the worst myasthenia crisis and took 3 weeeks to be stabilized. I pray that every treatment works in our favor because there's is still life to live. Don't give up....
Thank you for sharing your experience. My nursing instructor uses your video for our class lecture and we all appreciate you sharing this, it has allowed us to better understand Myasthenia Gravis
Thanks for your support I really appreciate it! It is great that she is using the video as that is my aim to help raise awareness! If you would like anymore info just let me know. Lara x
Thank you for sharing, this is helping my class understand this condition better for our Anatomy & Physiology course in Uni.
You are in my prayers.
hi Lana you are very brave to put this up.good on you!! :) I also have all the same symptoms and was diagnosed when I was 15 years old but went into hospital and had a thyrectomy, then I was symptom free for years im now 35 and its all came back a few months ago!!! id love to see how your getting on now! maybe stay intouch :) STAY STRONG x
My sister was diagnosed with mg recently. Thanks for the video, helped me understand what she's going through.
Thank you for sharing Lara, much appreciated for us trying to visualize symptoms when studying the disease
very pretty girl btw
Thank you for teaching us about Myasthenia Gravis, I will be thinking about you on my medical surgical exam.
I'll be praying that you get relief from this burden your strong and beautiful I'm a student nurse and I'm learning about this disease thank you for sharing you helped me to understand more about what this disease is like to deal with I hope to use what you discussed to be a better care taker in my future keep shining your wonderful light !
Nurses have been a huge part of my MG journey and I thankyou for showing an interest :) just one person who is interested and doesn't make you feel like a burden for having a something they don't understand make such a difference during a time of need in hospital.
Agreed 100% as care takers we have to make sure that we understand the needs people with MG will have I want to be a good nurse so if I come across a patient with MG I hope to make their hospital experience better and less traumatic as hospital experiences alone are tough God bless you all who suffer this disease stay strong ❤️
Hi - i was diagnosed with MG in 2010 and things got so bad that I couldn't even lift my arms or hold my head up! In the end I was found to have a thymoma and it was removed. This knocked MG on its ass and I'm almost back to normal these days, although I'm on Azathioprene and a small dose of steroids. Watching your video brought back a lot of painful memories. Good luck with everything and look into thymus removal - having mine removed turned my life around. --mike
Hey! Thanks so much for posting your video! I'm an occupational therapy student studying for my board examination. Thanks so much for giving a demo of how your symptoms affect you. I can imagine it can be frustrating sometimes when your muscles get weak, but you did a great job! Hang in there, and good luck with the doctor visit... I hate doctors too! :)
Lara, Thank you for sharing your story! I was diagnosed with mg in February of this year. I am 76! However, I believe that I have had it for a while (years)! So sorry you are having to deal with this at your age! God bless. My prayers are with you.
Thank you for sharing! Your video was very informative and helpful in understanding Myasthenia Gravis.
Hang in there Lara! I was just diagnosed with MG in the early phases. You are not alone!
Thank you so much for this video, this helps medical students so much! Thank you as I had no idea what I imagined in my mind it would feel like to have this condition. Video application does wonders when all you know is textbook. I will think about your condition when I see other patients I really appreciate your sharing
I know this is late; you may have graduated by now. If so, Congratulations! I just wanted to say that my grandson is in med school, reads/studies voraciously (thank God he loves it), but I honestly don't know if he's ever watched UA-cam videos like this. I'm watching because we're at the beginning of the search to find out which autoimmune disease I have. But your so right; what a great tool it is for med students to listen to and see patients...real, live people, and hear their stories... while learning from books and cadavers. In going to call him now and ask if that's part of his study routine!
I am sorry for saying this out of the subject, but she is so beautiful I can't express, so Ill just leave it like that. Also my mother has this illness, this is what got me here in the first place, thank you for the video and I really wish the girl to get her health back.
Very Beautiful Young lady! I wish you all the best and thank you for sharing your story. You have a lot of courage and I commend you for that.
thanks for the video pretty lady, i just had a blood test for MG today and an MRI next week. i have been having trouble speaking for a few months now CHEERS!
Thanks for sharing your story. I'm in nursing school and we are studying MG. I admire your strengh... I know that I sure can't imagine what you are going through. Hopefully one day there will be some sort of a cure.
Just been diagnosed hun, you’re amazing... stay strong x
Hi Tracy, I am sorry to hear that you have just been diagnosed. I hope you are doing OK and keeping positive. My MG is well managed, although I do still get fluctuations. I have learnt what my triggers are, and when I need to rest. I also try to keep fit and eat well to help support my body.
I wish you all the best!
Lara
Thank you for the video Lara
Thank you for sharing this video! I'm a med student and this helped me to better understand MG.
Praying for your healing
You poor thing! I am graduating from nursing school and we have been talking about this quite a bit. I hope they find a cure for it soon... this seems miserable. You look like you take it in stride and your attitude is beautiful. Hang in there.
You are a fighter. You can overcome all your difficulties.
I know you haven’t uploaded in some time, this was quite interesting. Saw a young woman with this yesterday and was interested to learn more. Good luck to you.
Awesome video. As many people commenting on here I was diagnosed with MG back in 2014. I, at the time was an Army Ranger with 1st Ranger Battalion and was deployed to Afghanistan. The symptoms first started to present themselves about a week prior to my deploying in the form of nasally speech. This soon moved into facial and mouth weakness. After about 2 months of onset I could hardly speak or move my face at all. This was a very hard time for me as I had no Idea what was going on and I was still working a very strenuous job both physically and mentally. It was also hard because I had no one to really talk to other than my wife and she was thousands of miles away in the U.S. Fast forward 2 months and I was back stateside, still working and training everyday, still with no answer. By this time I was deeply depressed as having extremely nasally speech was very hard for me to cope with. I am a very Type A personality in an extremely type A profession so feeling weak and appearing physically weak was a big blow to my ego. I never thought about suicide however, at the time I couldn't care less if I died as I felt I would be a burden on my wife for the remainder of our lives. One morning after a run I had a severe episode that affected my breathing so I was sent to the ER. By this time I had just recently been diagnosed with MG and while being x-ray'd they discovered a thyoma . I was scheduled for emergency surgery the next day. After waking up from surgery my MG completely went into remission and has yet to return in any form. I am still on prednisone 5mg every other day which manages my MG very well. The real reason for me writing this was to say that no matter how hopeless you get dealing with this disease there is always hope that it will go into remission and the struggles you put up with everyday will make you a better person in the long run. MG has changed my outlook on life drastically as I am sure it has to everyone who deals with this disease.
Thanks so much for sharing your story, I hope you are still doing well and keeping positive!
Thank you for sharing. My older brother was diagnosed a year ago with MG. His first crisis came out of nowhere and it was terrifying. It happened when he was eating and because his swallowing shut down, he began to choke. Luckily, he was in the hospital recovering from a thyroidectomy and was due to be released the next morning. Well, his 2-day stay turned into a 10-day stay, with 5 of those days hooked to a respirator. He had IVG treatment as well as plasmapheresis. Since that time, the right combination of medication and lifestyle change has given him his life back. It took a good year for this to happen. You are a brave and strong young woman and I wish you well. Take care.
Thank you for making this video..
Thanks for sharing. Hope you get well soon. God bless.
I hope you well. You are so pretty. Be brave.
God bless you sweetheart I hope you get well ❤️🙏😔
You are so beautiful! Thank you so much for sharing. I hope this video helps us grow in the medical field and find a cure!
Diagnosed in sept 2019 I have the same issues you have its so frustrating not being able to express yourself the way you used to I understand.
You were very lucky they diagnosed you when you first showed symptoms. I had episodes for 40 years, off and on and all they wanted to check me for was MS. I finally told the doctor who diagnosed me that I did not have MS and she was not testing me for it. She told me what I had and tested me for it and I have MG. I was diagnosed about 6 years ago. I am now 63 and my MG has been out of control more than good times. I have to walk with a walker I designed, because I never know when it will hit my knees and I fall. Right now it is messing with my eyes, blurry vision and double vision. I just had plasmapheresis less than a month ago. And my symptoms are back. I struggle to talk at times, I go to my room and don't talk to anyone. I live in an assisted living in Texas, USA. I had a 4 year period where I could not raise my arms to brush my hair. I alway fear going back to that stage. Breathing was difficult for me and it is again now. They can't give me the steroids because my glucose level goes up to nearly 600. I am on two different types of Mestonin and Imuran. I take life one day at a time. My brother lives here as well, he has Lewy Body Dementia . I better go, it is getting hard to type. Good Luck to you and anyone else who had thes horrible disease.
Hey Lara! I am a 26 year old with a diagnose of MG for the past 5 years as well. Watching your video made me sad, remembering all those awful moments especially with having a rare disease like mg which not a lot of people know so they can hardly relate to you. I had all the syptoms you described plus i fell into mg crisis in which I lost capability of using arms, legs, even my eyes- i didn't have the strenght to open them, and when i did the light bothered me. Not to mention talking, eating, drinking.. I had also thymectomy. IVIG, azathrophine and plasmapheresis didn't help. I was in a hospital for more than 5 months. For 4 years I took 180mg Mestinon, 150mg Prednisone (Imuran) and from 48-4mg of corticosteroids (Medrol) per day. This treatment + eating healthy food and meditating helped me to come where I am now - since July 2013 I'm in remission. Not 100%, there are still days I have numbness around my lips, but there's no comparisment to what I was going thru past years. If you want to talk about mg and going thru stuff I know you're going I'll be happy to talk about it. :) Cheers, Dolores
Hi Dolores, Thanks for your message it is really encouraging to hear about other peoples experience and how they have tried to improve their condition. I hope everything is still going well for you, I am definitely going to carry on with my healthy eating and exercise to try and improve my symptoms too! Thanks again for your support, all the best, Lara
Thank you sharing your story with us. you are so beautiful.
sending you lots of love
from Oman
R u also MG diagnosed
I was discharged from the hospital 2 months ago with a tunneled catheter in my chest, so I can have out patient plasma exchange. Before that I was back in the hospital every two weeks for 4 months on the ventilator unable to breath. Thanks for sharing. I know it's hard. Hang in there.
Hang in there beautiful. Thank you for sharing with us.
Thanks for sharing the information.
thanks! Hope you are doing better
I've had MG for 17 years, thank you
you are so brave. thank you for sharing
thank you for sharing this! God bless you
One of the tips in an give you is, keep track of when your symptoms get worse. Keep track of any food, medications, stressful situations or people. For example, I noticed that an hour after eating any food containing tomatoes, my symptoms would flare up. I would get a lot weaker for days. Also, I decided to quit my job. Why? Every time I was working my employees would noticed my left eye dripping. My voice would get exactly like yours, and I would get increasingly tired. After a 3 to 4 hour nap, my energy would come back. However, I would be functioning maybe at 70% energy level. I also realized that worrying about MG was making me worse so I decided to use visualization techniques to imagine ninates( these are tiny machines inside my body conducting repairs). Each time I took a nap, or went to sleep, I would imagine this army of self replicating machines inside my body fixing my muscle/nerve connections. It was sort of like a sci-fi movie in my mind in which I would fall asleep. Every time. I got great results from that, however, once you start, do not share what you are doing with anybody. Why, you need suspension of disbelief for this to. Work. The moment you share what you are doing with the world, somehow, they communicate, consciously or unconsciously, using words or body language that they don’t believe. So, they break. The illusion. Each time that happened to me, I would invariably get sick (a cold, the flu, etc...) and my MG would act up too. Took me 2 months to fix my internal fantasy. My longer stretch of time was from 2007 to. 2017. ( not a cold, not a flu, no infections of any kind for all that time. An unusual situation for me since I used to get sick all the time.) however, I told a neurologist and immediately got sick and my MG flare up.
Anyhow, I hope you are doing well. Good luck.
I watched this video when I was 18 after months of searching the Internet for what was wrong with me and being afraid to go to the doctor because I thought I had something like a brain tumor. It was impossible to describe to Google what was happening to my voice, but when I watched this video, I knew immediately that this is what I have before I even went to the doctor. I'm 20 now and about to talk to my doctor about IVIG because CellCept alone isn't working and the amount of Mestinon I have to take to make up for it is causing too many side effects. No thymoma, so it looks like I'm stuck with the MG long-term. When I got my diagnosis, it was a huge relief to know what was wrong, so I didn't cry or get upset or anything. I actually didn't cry over it until last week because my eyes aren't working right and I almost fell twice on campus on the first day of classes and I couldn't even use my arms to brush my own hair. I've had to come home from university and return to community college because of it twice now, but I know other people who have MG worse. Thank you for this video. Who knows how long it would've taken me to get diagnosed if I hadn't found this. Nobody ever knows what it is - not even the nurses or nurse practitioners I come across.
Hi, thank you so much for your support. Try to stay positive and strong, you can control this! I really believe we need to continue to tell people about this disease and raise awareness. I have also been trying to reduce any inflammatory foods in my diet to help support my body in a natural way. I have cut out/drastically reduced meat, dairy and gluten and find it has helped me. I wish you all the best. Lara x
I have been taking mestinon since 9 months old and now I'm 17. Never felt something like a side effect. Guess I'm lucky
Hi Lara. I am 40 years old and was diagnosed with MG when I was 27. This means I have lived with this disease for about 13 years. I too started with very similar symptoms to you but I can say that 13 years on I am living a fairly 'normal' life. I'm on methotrexate and have had a thymectomy and I'd say managing the medication is far worse than my actual condition. I don't know where you are with MG now but stay positive and make sure you place people around you who will support you. For me I'd only been married two years when I developed the disease and I could not have got through if it wasn't for my incredibly supportive husband. Good luck!
I diagnosed with mg before 4 y now I'm 18 y please tell me how I can live without smiling ??how can enjoy my life while I can't smlile 💔
Thank you for sharing. You are beautiful Laura :)
Hi Lara, this video was great, hearing from somebody with your symptoms. I have recently been feeling terrible, quick onset of soreness after eating which leads to strenuous breathing. I am currently undiagnosed, but I have been doing a ton of research online and everything about MG makes sense to what I've been feeling. I keep reading more and more as i lay in bed, and cant help but feel a flutter in my chest like: "wow, what does this mean for me now, what do i have to live with for life now?" Going to see my doctor in 2 days. But my mind is already set on what i might have to do to change my life. Please make more videos!
Hi I hope your appointment with your Doctor went ok, and I hope you get a diagnosis soon. If it is MG then keep positive, there are a lot of things which do help. Thanks for your message, Lara