I was diagnosed with MG when I was in 11th grade, now I'm going to college. My teacher said, I am a chosen person, I am special. She always encourages me. I always try to make peace and make MG a friend. Yeah, I'm fine. ♡
And god bless u.Ive been suicidal bcuz i believe i have an autoimmune disease and no one ever believed me an it ruined my life.I am undiagnosed but these quality videos help me understand it better.
I'm really glad that the videos helped you. It is very hard to explain to people what you are feeling because they cannot relate to what you are saying at all, so that is why they would think it's not true.
Nice Video Ross. I was also diagnosed with MG in 1992. My Thymectomy done in 1994, I was taking Mestinon 60 mg 7 to 8 tablets in a day. The symptoms were same e.g ptosis,diplopia, severe fatigue. But gradually it started to recover, I reduced my medicine,and even from 2001 I m leading my life without medicine. Finally i will like to say we can recover from MG by taking the proper advice from our neurologist and maintaining the strength of our mind to fight with this rare disease.
This is another autoimmune condition. Like all the other AI conditions mainstream Medicine pops the symptoms affecting a particular or group of organs into a silo and treats it as a stand alone disease. It’s not a disease. It’s process just like lupus and MS and RA and many others. I have several autoimmune conditions which isn’t unusual bc this is an other process that kicks off due to an overactive immune system. We can never get completely rid of the antibodies that have been created by our immune system to keep us safe from some perceived harm but it is within our power to be our own health detective, find and then avoid the triggers that flare the immune system into over reacting to environmental triggers. Great video. All the best
@@Hmcgraw21 my left eye drooped and i had a prism added to my glasses. Back in February overnight my eye corrected itself. No more double vision or droop.
thank you for the insight. I’m scheduled to go to a doctor and have him do the appropriate tests to see if I suffer from MG. I seem to have all the classic symptoms. I wish you all the best and again thank you
Hello, I am in the process of getting a diagnosis and came across a video as I am trying to explain to others what im experiencing and hoped for a video like this. My symptoms finally brought me to this diagnosis as I was finally able to articulate what my eyes were doing as well as take pictures identical to what you showed (talk about confirmation which brought me to tears). When the symptoms first started a year and half back, it was alot of weird nerve related things they and with the presence of white brain matter they thought it might be MS but it has turned out not to be. I've since been searching for answers. I really appreciated your video and telling of your situation! Thank you!
Wow, so happy you are in remission. My husband is dealing with these MG issues, I will share your video. Thanks, look forward to more, may your health continue to improve.
I been diagnosed a month ago. I have had plex/plasmapheresis and I take delta8 THC vape that prevents an attack and it adds or replaces the damaged and missing acetylcholine, so marijuana helps with controlling MG symptoms. I also get rituximab which is very powerful and last up to 6 months keeping symptoms in check. I will undergo a thymectomy to have my thymus remove which slows down the production of the harmful antibodies. Currently my symptoms are mainly fatigued, the droopy eyes, double vision. I don’t get problems swallowing or breathing. But sometimes I forget I have this condition because the symptoms are so small and doesn’t exist that I don’t feel like I have this condition. With a combination of treatment methods you can live a LONG normal life. Your attitude, diet, treatments and lifestyle makes up the big difference.
Thank you for some useful explanations of symptoms - I was diagnosed ( after a long 7 years!) at 25 and now at 55 years old can say it's manageable with care, though I've always had symptoms probably due to a demanding family life 😅 ( 2 sets of twins and one more). Certainly been tough times but grateful for the full and happy life
MGAthlete I’m doing okay dealing with the ocular symptoms and super fatigue along with difficulty swallowing. I’m on mestinon and prednisone currently. The mestinon was helping and now it’s not unfortunately.
@@katieenstad3441 Seems unfortunately to happen to most. Same happened to me. Slight improvement/stabilization after diagnosis and getting meds, but then it declines. I am going to keep doing vids on MG for now, with the aim of sharing the diet and lifestyle things I learned and implemented. So hopefully that can assist you and others, but if there's anything specific you can message my FB or Instagram: MGAthlete
Thanks for this video, i was diagnosed 2018, I have two months left of weening off prednisolone. still taking azaphrphine and mestinon, I am back to the gym, started to lift light weights just this week! I also have fire in my eyes ,very determined to see a light at the end of the tunnel. As you described in the video all the same effects happened to me i also lost use of my neck now only battling with fatigue , occasional eye droop and the mess the steroids have left me with, anger outburst, 20 pounds over weight ,moon face although i am grateful steroids have bought me this far through my healing, The rest now is up to me. I can do this.We can do this stay strong warriors
Today, I found out my time on prednisone (which caused me to gain 20 pounds and have moonface also) caused bone death in my femur above my knee. I took the prednisone in 2018. The bone death was an incidental finding on an MRI. Pretty scary to see.
@@KMx108 are you still taking them now? My legs play up now and again, I do wonder if it’s related.. I have now made it down to 2 mgs just a few months to go and that is the end of that!
@@truthgambit I came off preds April 2022 around about that time 4 years I struggled, this year I now and again get a slight twinge but nothing in comparison to how it was… hope you’re doing well!
Great video Ross! You are certainly doing amazing work and are an inspiration to people facing this challenge. I will always be greatfull for your help and advice. Keep up the good work!
I’ve just been diagnosed (not ocular) which is all quite overwhelming in itself. Struggling to see what the future holds. Watching this video gives me hope and faith for some kind of future.
@@sjm2726 Do you like beef, butter, bacon, fish, or eggs? These are all foods one can live on. We don't need to eat plants, and we are much happier and healthier when we don't.
I have, was diqgnosed 2017. I used to run and i hqve to stop. U r right it can be managed now i am back to my normal life. I am now 60, I do yoga it helps me alot and i feel great ❤
I appreciate the video!! I am in the process of getting diagnosed. There aren’t a lot of personal testimonies out. Thanks for this!! I’m pretty sure I have MG. Done all the test. Just waiting on lab tests.
Thanks for your input. I had symptoms after a Chikungunya virus episode in 2014. Started with intermittent diplopia , dizziness, speech slurring etc. Each time a different symptom would be first and strongest.so it took almost 3 years to get a diagnosis. It is stable now on pyridostigmine, but varies from day today and also throughout the day. At 85 it gets confused with the general aspects of aging. Choking is what fears me most and I no longer eat in front of others. ..it is not a pretty sight. It is vastly misunderstood by most doctors and several tell me they have only read of it and have never treated a patient who has been diagnosed with MS. Thanks for putting yourself out there.
oh yeah i have MG too recently diagnosed but was suffering from it a long time ago i also stopped eating infront of others and giving presentations due to slurred speech , MG made a introvert and i am grateful for it
Excellent video. I have had MG for about 5 years, but its not a severe case and i have managed to work around it. The double vision sure makes driving a chore, though.
thanks brother... Last question work with a doctor. I then looked into my diet and lifestyle and tried to remove as much stress as possible. I limit process foods. Mainly trying to avoid vegetable oils and eat the best quality foods i can afford. I takes time but it gets better
dude you are really brave ! you are amazing much ! like and subs .... wish you the best ... i hope one day they find more solutions for this once and for all ! hugs to you bro ....
@@mgathlete1431 no ty that made me happy my gf have same disease I am looking all over the world to end it for her and to make it leave I love her so much when I saw your video I cried.... You are have a perfect personality no one would dare as you did... You made me wanna do more to help my gf God bless you
positive video but it is worth saying not everyone gets to remission, and remission doesn't always last. I'm still trying to find an effective treatment, but hoping at some point to get at least someway back to normal life. Fingers crossed.
exactly this, just posted the same. I do get a feeling of hope, but what I worry about is having feelings like I'm not trying hard enough to control the fact my body is still making a lot of antibodies which I have no control over. One day hopefully however.
I would like to ask: why are there no clinical trials using umbilical cord derived mesenchymal stem cells (uMSC) to treat myasthenia gravis ? I read and am told that MG is an autoimmune disease. There are many people going to Mexico to have treatments using uMSCs for their individual auto immune condition. Many clinics in Mexico, and Dr. Neil Riordan's Stem Cell Institute in Panama have listed protocols for treating myasthenia gravis. Why isn't the use of uMSCs being pursued ? Where are the clinical trials ?
Hey man I just been diagnosed now about a year maybe and really honesty as of January we have come to knowing I have MG but for about a year the symptoms have been affecting me if you can help me out man just give me tips and some information so I could be going down the right path truly appreciate it cause I’m having difficulty dealing coping with this issue✌🏿❤️🙏🏿
Hi. Sorry it's not going so well. What symptoms are facing currently? I have put out a video called "My Top Information Sources" which is where most of the information I found helpful comes from. I focused on my diet, mindset and lifestyle. I will do videos on each of those topics to try explain them further. But I would recommend going through the information and trying to see what works for you. If there's anything specific that you would like to ask let me know.
I hope you are still doing well. I had Ptosis in my left eye that would totally close. This led to my doctor, who didn't know what the problem was, deciding to give me prednisone starting at 50mg and tapering off. The ptosis went away after eight days. About a month after that I got the double vision which was very disturbing. I had the usual tests MRI of brain and neck, blood tests and was diagnosed with MG. An ophthalmologist recommended to not use prednisone and an emergency room doc gave me an Rx for another steroid which did nothing. My drivers license was about to expire, and I was driving with an eye patch. My primary care doc, who had never heard of MG but is now quite educated about it, put me back on prednisone and referred me to a neurologist. While I still get some instability when walking and fatigue, I am better with little to no eye symptoms. I got my license renewed too. I was also getting bad leg cramps, mostly at night. A 250mg magnesium tablet before bed got rid of that. Your video shows what most MG patients go through.
I have been diagnosed with MG but my symptoms happened in reverse to yours, double vision first then the eyelid drop on the left. Did Prednisone clear you're symptoms and have you stopped taking medication now? How are you feeling?
I was 1 1/2 in remission without any medication so yes it’s possible. I was diagnosed with ocular MG at the 12 years ago. I’m currently back one 1 60mg tablet of pyridostigmine and medrol pack. Word of advise with anyone suffering from ocular Mg. Get to know your body and your systems as well as do you symptoms improve with your medications or get worse or are you taking all your medications at one time . I have notice with taking all mg medications at once will make my symptoms worse. Also steroids ( which steroids are good for your mg symptoms and which ones are not) prednisone I have serve complications. I never got better . So what I started doing is recognizing my symptoms and figuring out what works for me . I use to take 13 pills a day . When I was in remission 0 now I’m up to 4 pills a day .
Hi. I was diagnosed with Ocular Myasthenia Gravis in July. I was put on Mestinon and my diplopia went away instantly. However I still have ptosis in one eye. My neurologist suggested I’d have to experiment with my dosage to see what my stomach would tolerate and what dosage would reverse the ptosis. He stated normally there’s a magic dosage. Noticing that you once were taking 13 pills a day can you expand on your dosages. I’ve seen some people take 120mg up to 6 times a day.
In terms of eye issues, my one eye did droop more than the other, but in terms of general body weakness I wasn't stronger/weaker on one side over the other.
Hello 🙂 first of all thank you for sharing your experience 👍🏽 At some point of your video, you said that after adopting a healthier lifestyle, you have been able to reduce your medication. My question is what medecine do you take, is it Mestinon?
I have experienced some forms of muscle failures.I used to go for running for a brief period.The first day i started and ran about 40 mins(it was a combo of 30% walk 50% jog and 10% run).When i came back home and few hours had lapsed i start noticing my muscles were giving up on me,they cudnt support me.I couldnt run for another 4 days.It took that much timr for my muscles to get back to normal condition.I felt like if i applied anymore stressed on it i wud just fall off.Not that it did happen.My legs prolly ghave up on me and caused me to fall off suddenly only 2 or 3 times so far so i wudnt call that a prominent thing but it has happened.Even with my arms all i did was 4 pushups and it started hurting around the shoulder region for the whole day.I feel like my legs and arms have gotten weaker.Same with my facial muscles .I have a hobby to rap but the more i rap the more numb my muscles get.I can no longer move my facial muscles while rapping.Is this what u described as muscle fatigue?
Nice video I was born with MG but was diagnosed at the age of 37 i am now 59 years old using pyridostigmine along with Azathioprine 50 MG I would like if someone can help me out i am still feeling weakness as I start to walk
Ive suddenly developed alternating ptosis at 23 and the only thing in the literature that points to it is myasthenia gravis or thyroid issues, I don’t have double vision but, I had normal eyes before but now this ruined my self esteem and I hate how I look which put me in a long depression, I really hope I can fix this..
I have Graves’ disease and myasthenia symptoms. I don’t know why but it seems that Graves/thyroid issues come hang in hand with MG. Did you test positive for MG in bloodwork?
MGAthlete not good I don’t know what this issue with swallowing is. It is either neurological or a stomach thing. I will keep you posted and you keep us posted too please!
was diagnosed with mg august 2020although all tests mri, ct and ct with that liquid showed negetive for the disease but the eylid test with ice suggested mg. Double vision , droopy eyelids and eyeballs were fixed solid would not move. been on meds since september 2020 and pleased to say one of my lids are open but close from time to time but left eye lid still closed but sometimes open for about 15 / 20 mins a day, double vision still with me like the plague. been off work for 5 mo. good to see yours cleared up and yeah cant reallyl shave yet as cant see my face properly as eyes have not fully freed up yet. can anyone give me a rough guide on how long yours took to clear up, was hoping maybe to hear i should be fine by x y z
@Pablo Dc I don't think that's what did it. Do you like beef, butter, bacon, fish, or eggs? These are all foods one can live on. I can't say this enough, we don't need to eat plants, and we are much happier and healthier when we don't.
Hey Ravi, yeah it can be very hard. It's tough to give general tips, but I looked outsides medication to improve my health by improving mentally, learning about nutrition and then lifestyle. Its takes time, I try to cut stress out, eat quality food and then took time off work and found a better job. I will post more videos about each aspect to explain the details of what I did in context. Goodluck man
MGAththlete touches on this in his video: You need to learn to be able to read your body. I have had MG for 11 1/2 years. When I am getting near an exacerbation, my speech starts to slur, I start feeling a little out of breath even while seated, it will then progress to a dragging of a limb while walking. I have learned to rest as soon as I start feeling that numbing sensation in my mouth. Rest means rest.., not necessarily sleep, but a period of doing nothing. Your muscles need that to recover before the symptoms worsen. Listen to your body, Adhere to what it is saying, and then you will have met half of the battle.
My husband has had mg for four years, with no signs of improvement. Could you tell me what treatment or medication helped you improve and go into remission. We know of no doctors in SA who specialize in treating the disease.
I was diagnosed MG at 17 in 1987. I find both covid vaccinations and covid infections very much exacerbate my MG. Anyone else out there similar? Also I have chronic generalized fasciculations. Anyone else have these?
Hi ross Please please help me I am from india The doctors neurologist are crap here My.mother has MG .but Musk antibodies I dont want her getting on corticosteroid I wanted to know did u do IVIG or Plasma And also was ur diet plant based?? Please please please reply
I didn't use any of those meds or transfusions. I only used mestinon for a year or so. I do not follow a plant based diet. I think animal products are an important source of nutrition. The main things I try follow are really limiting unsaturated fats, removing difficult to digest foods (raw leaves etc, and nuts/seeds). More info is in my top resources video
Yes, I had autoimmune thyroid issues. I was diagnosed with Graves Disease (over active thyroid condition), but I think I actually have an under active thyroid now, and the over active symptoms/test results were just signs of extreme stress
Hello, I was diagnosed with MG 2 years ago. What would be your recommendations(diet and exercises)? I am on meds but it seems to stop working. I am having double vision Any advise would help Thank you
If you seem my video about top resources where I mention the online copy of an MG book, that is sort of the basis for my eating. Low polyunsaturated fat, lower phosphorus relative to calcium, more glycine/gelatin rich proteins over methionine proteins, and then getting manganese rich foods in too. I had a big focus on stress reduction in terms or diet (easier to digest foods), lifestyle (stopped studying and work for a bit), sleep/exercise/circadian rhythm (used to be awake at night a lot), and then relationships too I think walking is more than enough exercise for most people, and then adjusting from there depending how much strength and energy I have.
My right eye is beginning to not focus and drift on it's own and weakness is my eyelid, last week the doctor told me she believes I have MG and I can't explain it I walk down the street half way and my left leg feels like I worked out with heavy weights, I can't hold a book in one hand for 5 min. I go for cat scan to see if I have another eyes disorder. I hope I don't have MG and the cat scan explains my eyes issues. I have thyroid disease and take levothyroxine for 5 years now. If any one has any ideas or things to look for let me know.
The's a big question. I did a lot and it's going to depend on each individual. But I learned a lot about diet, lifestyle, stress etc. and then changed a lot of things to get improvements. It takes time
There's no specific exercises. I think lowering stress is important, so sometimes overdoing exercise isn't helpful! I think walking and getting outside was really good for me
Quite a few things all added together I think. If you find my video about top MG information sources, I mention a book and articles that I really learned from. I changed my diet quite radically, stopped working and studying to focus on recovery, and then slowly starting adding things back into my life, which I am still doing today. I focus on eating the best I can and lowering stress
Gone wrong .. My last question would be a problem with smoking cigarettes .. and did you consume the medicine first .. and please tell how long your problem was
how can MG be diagnosed? it is hard to tell if im suffering from anxiety disorder or MG..because symptoms i can feel is heaviness in my head, inability to complete satisfying yawn, heaviness in some parts of body when standing, and my left eye twitch and somehow had pressure that weak.
When you get double vision ,sit down ,cover one eye ,you will now not see double vision, ,do the same with the other eye ,cover the other , I noticed it would then stop double vision when you do , think of the best ,you have to wife's , lol. ❤️ It helps me.
I am from Bangladesh saying brother help me I have been suffering from this disease for 1 year but did not do well. I am 18 years old Thymes Normal Anti Body Negative Please tell what to do as a groom's brother
Work with a doctor. I then looked into my diet and lifestyle and tried to remove as much stress as possible. I limit process foods, mainly trying to avoid vegetable oils and eat the best quality foods I can afford. I takes time, but it gets better
@@hshanif3079 I don't use medicine anymore. I eat meat, eggs, dairy. Saturated fats (butter and coconut oil). fruits, honey, orange juice and well cooked vegetables. coffee. Mainly trying to avoid polyunsaturated fats in my diet and foods that are difficult to digest too (which can be raw foods, salads, nuts and seed, grains not properly prepared). It's going to be different for different people and depending on what foods are available and what one can afford to get
I have had ptosis in one eye for 2 1/2 - 3 years. It’s not super super severe. I don’t appear to have any other symptoms. I do not have health insurance and can not afford testing. How long after I noticed the dropping eyelid would I have gotten the general symptoms? I am hoping if it is MG it is only in my eyes and doesn’t progress. What do you think??
That's difficult to say. Everyone's unique in there symptoms and whether they will progress or not. I would agree that one doesnt want it to progress as the eyes are bad enough, body weakness is debilitating! It seems like you have had it in your eye for a long time and may not progress. mine progressed after 6 months
MGAthlete thanks for the reply. Also I want to mention that my eyelid dropping is only on one eye and only very little. Most people cannot tell until I show them and they compare them.
@@mgathlete1431 Hi Ross this is Vivaan I have seen all.ur videos My mother has MG all over from her facial muscles to the stomach muscles It's very upsetting to see her struggle She is only 40 . I am 15 yrs old I am terrified I wanted few answers please help . Please let me know what kind of treatment did u take..IVIG ?plasma ? Food she s on a plant based vegan diet But seeing you I have hope please guide Me I am from India and trust me the Neurologist here are Crap.
Unfortunately that's 1 of the symptoms. I struggled with chewing and talking too. The jaw muscles get tired easily. Try rest and eat easier to chew foods
My swallowing difficulties then a weak voice were my primary symptoms before diagnosis alongside pain in the sternum. I beginning to think that these symptoms were stress related. Thankfully my GP realised I was going down hill rapidly and stepped in. Now I’m starting my journey of finding my new normal. Whatever that maybe. Remission is just a dream that I keep clinging on to.
![HIMRA - DAGBACHI [Official Music Video]](http://i.ytimg.com/vi/-QB-RvT3yj8/mqdefault.jpg)
I was diagnosed with MG when I was in 11th grade, now I'm going to college. My teacher said, I am a chosen person, I am special. She always encourages me. I always try to make peace and make MG a friend. Yeah, I'm fine. ♡
And god bless u.Ive been suicidal bcuz i believe i have an autoimmune disease and no one ever believed me an it ruined my life.I am undiagnosed but these quality videos help me understand it better.
I'm really glad that the videos helped you. It is very hard to explain to people what you are feeling because they cannot relate to what you are saying at all, so that is why they would think it's not true.
My father is goung nuts witg this. He is dizzy
Nice Video Ross. I was also diagnosed with MG in 1992. My Thymectomy done in 1994, I was taking Mestinon 60 mg 7 to 8 tablets in a day. The symptoms were same e.g ptosis,diplopia, severe fatigue. But gradually it started to recover, I reduced my medicine,and even from 2001 I m leading my life without medicine. Finally i will like to say we can recover from MG by taking the proper advice from our neurologist and maintaining the strength of our mind to fight with this rare disease.
Now how are you
This is another autoimmune condition. Like all the other AI conditions mainstream
Medicine pops the symptoms affecting a particular or group of organs into a silo and treats it as a stand alone disease. It’s not a disease. It’s process just like lupus and MS and RA and many others. I have several autoimmune conditions which isn’t unusual bc this is an other process that kicks off due to an overactive immune system. We can never get completely rid of the antibodies that have been created by our immune system to keep us safe from some perceived harm but it is within our power to be our own health detective, find and then avoid the triggers that flare the immune system into over reacting to environmental triggers. Great video. All the best
This is so well explained and articulated. It’s so good to see that people can recover from this disease and be as healthy and strong as you are.
Thank you Tylon! Let's hope many more people will recover!
I have occular I was just diagnosed this week. Double vision has been awful. I will cope and work through it.
I myself
Did you get cure with the double vision
@@Hmcgraw21 my left eye drooped and i had a prism added to my glasses. Back in February overnight my eye corrected itself. No more double vision or droop.
thank you for the insight. I’m scheduled to go to a doctor and have him do the appropriate tests to see if I suffer from MG. I seem to have all the classic symptoms. I wish you all the best and again thank you
Hello, I am in the process of getting a diagnosis and came across a video as I am trying to explain to others what im experiencing and hoped for a video like this. My symptoms finally brought me to this diagnosis as I was finally able to articulate what my eyes were doing as well as take pictures identical to what you showed (talk about confirmation which brought me to tears).
When the symptoms first started a year and half back, it was alot of weird nerve related things they and with the presence of white brain matter they thought it might be MS but it has turned out not to be. I've since been searching for answers. I really appreciated your video and telling of your situation! Thank you!
Wow, so happy you are in remission. My husband is dealing with these MG issues, I will share your video. Thanks, look forward to more, may your health continue to improve.
Thank you. Sorry to hear about your husband. Thanks for sharing. More coming soon
I been diagnosed a month ago. I have had plex/plasmapheresis and I take delta8 THC vape that prevents an attack and it adds or replaces the damaged and missing acetylcholine, so marijuana helps with controlling MG symptoms. I also get rituximab which is very powerful and last up to 6 months keeping symptoms in check. I will undergo a thymectomy to have my thymus remove which slows down the production of the harmful antibodies. Currently my symptoms are mainly fatigued, the droopy eyes, double vision. I don’t get problems swallowing or breathing. But sometimes I forget I have this condition because the symptoms are so small and doesn’t exist that I don’t feel like I have this condition. With a combination of treatment methods you can live a LONG normal life. Your attitude, diet, treatments and lifestyle makes up the big difference.
Definitely agree with you - diet, attitude and lifestyle make the difference. All the best!
MGAthlete thanks!
Thank you for some useful explanations of symptoms - I was diagnosed ( after a long 7 years!) at 25 and now at 55 years old can say it's manageable with care, though I've always had symptoms probably due to a demanding family life 😅 ( 2 sets of twins and one more). Certainly been tough times but grateful for the full and happy life
I am newly diagnosed and I’m so glad I came across this video! Thank you so much maybe we could get in touch ✅
Hey Katie, sorry to hear about the diagnosis! I'm glad the video was useful for you. Yeah sure, how are you doing currently?
MGAthlete I’m doing okay dealing with the ocular symptoms and super fatigue along with difficulty swallowing. I’m on mestinon and prednisone currently. The mestinon was helping and now it’s not unfortunately.
@@katieenstad3441 Seems unfortunately to happen to most. Same happened to me. Slight improvement/stabilization after diagnosis and getting meds, but then it declines. I am going to keep doing vids on MG for now, with the aim of sharing the diet and lifestyle things I learned and implemented. So hopefully that can assist you and others, but if there's anything specific you can message my FB or Instagram: MGAthlete
Thank you 🙏 ABSOLUTELY TRUE it’s a long journey 😢especially when it returns.
Thanks for this video, i was diagnosed 2018, I have two months left of weening off prednisolone. still taking azaphrphine and mestinon, I am back to the gym, started to lift light weights just this week! I also have fire in my eyes ,very determined to see a light at the end of the tunnel. As you described in the video all the same effects happened to me i also lost use of my neck now only battling with fatigue , occasional eye droop and the mess the steroids have left me with, anger outburst, 20 pounds over weight ,moon face although i am grateful steroids have bought me this far through my healing, The rest now is up to me. I can do this.We can do this stay strong warriors
Thanks for sharing your story. I hope the weaning continues to go well. Slow and steady, you got this
Today, I found out my time on prednisone (which caused me to gain 20 pounds and have moonface also) caused bone death in my femur above my knee. I took the prednisone in 2018. The bone death was an incidental finding on an MRI. Pretty scary to see.
@@KMx108 are you still taking them now? My legs play up now and again, I do wonder if it’s related.. I have now made it down to 2 mgs just a few months to go and that is the end of that!
@@truthgambit I came off preds April 2022 around about that time 4 years I struggled, this year I now and again get a slight twinge but nothing in comparison to how it was… hope you’re doing well!
Keep going do not give up also when you’re ready try intermediate fasting and just be kind to yourself let me know how you get on all the best
Really appreciate the information, just been diagnosed myself. Thanks so much again.
Great video Ross! You are certainly doing amazing work and are an inspiration to people facing this challenge. I will always be greatfull for your help and advice. Keep up the good work!
Thank you for that Ettienne. Means a lot. I hope it will all be useful for other patients in future!
Looking so strong! You’ve come so far on the journey to optimal health!
Thanks Ian for the support and part time filming ;)
I’ve just been diagnosed (not ocular) which is all quite overwhelming in itself. Struggling to see what the future holds. Watching this video gives me hope and faith for some kind of future.
@@sjm2726 Do you like beef, butter, bacon, fish, or eggs? These are all foods one can live on. We don't need to eat plants, and we are much happier and healthier when we don't.
@@rawmilkmike carnivore? :) I started and improvment is already here ❤
I have, was diqgnosed 2017. I used to run and i hqve to stop. U r right it can be managed now i am back to my normal life. I am now 60, I do yoga it helps me alot and i feel great ❤
I appreciate the video!! I am in the process of getting diagnosed. There aren’t a lot of personal testimonies out. Thanks for this!! I’m pretty sure I have MG. Done all the test. Just waiting on lab tests.
I hope the results go well and either way that you can get an answer on diagnosis and go from there. All the best going forward!
Thanks for your input. I had symptoms after a Chikungunya virus episode in 2014. Started with intermittent diplopia , dizziness, speech slurring etc. Each time a different symptom would be first and strongest.so it took almost 3 years to get a diagnosis. It is stable now on pyridostigmine, but varies from day today and also throughout the day. At 85 it gets confused with the general aspects of aging. Choking is what fears me most and I no longer eat in front of others. ..it is not a pretty sight. It is vastly misunderstood by most doctors and several tell me they have only read of it and have never treated a patient who has been diagnosed with MS. Thanks for putting yourself out there.
oh yeah i have MG too recently diagnosed but was suffering from it a long time ago i also stopped eating infront of others and giving presentations due to slurred speech , MG made a introvert and i am grateful for it
Wonderful video! Much respect to your perseverance. I was diagnosed with MG in 2012.
Thanks Marvin. I hope you are doing better now?!
@@mgathlete1431 hey ross
Wating for ur reply
Excellent video. I have had MG for about 5 years, but its not a severe case and i have managed to work around it. The double vision sure makes driving a chore, though.
My father has this.. thanks for the video
thanks brother... Last question work with a doctor. I then looked into my diet and lifestyle and tried to remove as much stress as possible. I limit process foods. Mainly trying to avoid vegetable oils and eat the best quality foods i can afford. I takes time but it gets better
Hs Hanif what’s the question?
You just copied pasted my comment
dude you are really brave ! you are amazing much ! like and subs .... wish you the best ... i hope one day they find more solutions for this once and for all ! hugs to you bro ....
Thank you very much!
@@mgathlete1431 no ty that made me happy my gf have same disease I am looking all over the world to end it for her and to make it leave I love her so much when I saw your video I cried.... You are have a perfect personality no one would dare as you did... You made me wanna do more to help my gf God bless you
Appreciate that. Wishing you and your gf the best!
Thank you for sharing your journey.
I'm a MG victim and this is so positive for me thanks
Thank you very much. It is a very informational video....Love it
Thank you, dear soul.🙏🔥
positive video but it is worth saying not everyone gets to remission, and remission doesn't always last. I'm still trying to find an effective treatment, but hoping at some point to get at least someway back to normal life. Fingers crossed.
exactly this, just posted the same. I do get a feeling of hope, but what I worry about is having feelings like I'm not trying hard enough to control the fact my body is still making a lot of antibodies which I have no control over. One day hopefully however.
Thanks
I would like to ask: why are there no clinical trials using umbilical cord derived mesenchymal stem cells (uMSC) to treat myasthenia gravis ?
I read and am told that MG is an autoimmune disease. There are many people going to Mexico to have treatments using uMSCs for their individual auto immune condition. Many clinics in Mexico, and Dr. Neil Riordan's Stem Cell Institute in Panama have listed protocols for treating myasthenia gravis.
Why isn't the use of uMSCs being pursued ? Where are the clinical trials ?
Hey man I just been diagnosed now about a year maybe and really honesty as of January we have come to knowing I have MG but for about a year the symptoms have been affecting me if you can help me out man just give me tips and some information so I could be going down the right path truly appreciate it cause I’m having difficulty dealing coping with this issue✌🏿❤️🙏🏿
Hi. Sorry it's not going so well. What symptoms are facing currently?
I have put out a video called "My Top Information Sources" which is where most of the information I found helpful comes from. I focused on my diet, mindset and lifestyle. I will do videos on each of those topics to try explain them further. But I would recommend going through the information and trying to see what works for you. If there's anything specific that you would like to ask let me know.
Fellow snowflake here
Thank you so much for giving me hope. I thought my life will be a mess for ever. Do you think we will recover from these symptoms 😜😜😜
Can you tell us how you overcome the symptoms. If you had some treatment. God bless you..
I hope you are still doing well. I had Ptosis in my left eye that would totally close. This led to my doctor, who didn't know what the problem was, deciding to give me prednisone starting at 50mg and tapering off. The ptosis went away after eight days. About a month after that I got the double vision which was very disturbing. I had the usual tests MRI of brain and neck, blood tests and was diagnosed with MG. An ophthalmologist recommended to not use prednisone and an emergency room doc gave me an Rx for another steroid which did nothing. My drivers license was about to expire, and I was driving with an eye patch. My primary care doc, who had never heard of MG but is now quite educated about it, put me back on prednisone and referred me to a neurologist. While I still get some instability when walking and fatigue, I am better with little to no eye symptoms. I got my license renewed too. I was also getting bad leg cramps, mostly at night. A 250mg magnesium tablet before bed got rid of that. Your video shows what most MG patients go through.
I have been diagnosed with MG but my symptoms happened in reverse to yours, double vision first then the eyelid drop on the left. Did Prednisone clear you're symptoms and have you stopped taking medication now? How are you feeling?
I was 1 1/2 in remission without any medication so yes it’s possible. I was diagnosed with ocular MG at the 12 years ago. I’m currently back one 1 60mg tablet of pyridostigmine and medrol pack. Word of advise with anyone suffering from ocular Mg. Get to know your body and your systems as well as do you symptoms improve with your medications or get worse or are you taking all your medications at one time . I have notice with taking all mg medications at once will make my symptoms worse. Also steroids ( which steroids are good for your mg symptoms and which ones are not) prednisone I have serve complications. I never got better . So what I started doing is recognizing my symptoms and figuring out what works for me . I use to take 13 pills a day . When I was in remission 0 now I’m up to 4 pills a day .
Thanks for the comment Jessica. I hope you get back to remission soon!
Hi. I was diagnosed with Ocular Myasthenia Gravis in July. I was put on Mestinon and my diplopia went away instantly. However I still have ptosis in one eye. My neurologist suggested I’d have to experiment with my dosage to see what my stomach would tolerate and what dosage would reverse the ptosis. He stated normally there’s a magic dosage. Noticing that you once were taking 13 pills a day can you expand on your dosages. I’ve seen some people take 120mg up to 6 times a day.
I was given Medrol and it had no effect. I do use one 10mg prednisone daily + Pryido.
😢
Yep I've been there,
Wonderful video, ty! May I ask you, did u have one side of your body more affected than the other? In terms of weakness and eye problems?
In terms of eye issues, my one eye did droop more than the other, but in terms of general body weakness I wasn't stronger/weaker on one side over the other.
How are you now? just landed on your video as i was searching how to heal double vision. It seems i have the same disease, how did you get healed?
Hello 🙂 first of all thank you for sharing your experience 👍🏽
At some point of your video, you said that after adopting a healthier lifestyle, you have been able to reduce your medication. My question is what medecine do you take, is it Mestinon?
No problem, thanks for the comment.
Yes, I used to take mestinon. I haven't taken medicine since 2016 though.
Mine has gone into remission after i was diagnosed 2 years prior. I don’t know why, and I have been told by my Dr. it might come back.
I have experienced some forms of muscle failures.I used to go for running for a brief period.The first day i started and ran about 40 mins(it was a combo of 30% walk 50% jog and 10% run).When i came back home and few hours had lapsed i start noticing my muscles were giving up on me,they cudnt support me.I couldnt run for another 4 days.It took that much timr for my muscles to get back to normal condition.I felt like if i applied anymore stressed on it i wud just fall off.Not that it did happen.My legs prolly ghave up on me and caused me to fall off suddenly only 2 or 3 times so far so i wudnt call that a prominent thing but it has happened.Even with my arms all i did was 4 pushups and it started hurting around the shoulder region for the whole day.I feel like my legs and arms have gotten weaker.Same with my facial muscles .I have a hobby to rap but the more i rap the more numb my muscles get.I can no longer move my facial muscles while rapping.Is this what u described as muscle fatigue?
That does sound like muscle fatigue to me. The point of being able to do anything more after exercise
Nice video I was born with MG but was diagnosed at the age of 37 i am now 59 years old using pyridostigmine along with Azathioprine 50 MG I would like if someone can help me out i am still feeling weakness as I start to walk
sir
i am suffering from myasthenia gravis for 22 years .please help me
You're lucky! Most people don't go into remission...
Ive suddenly developed alternating ptosis at 23 and the only thing in the literature that points to it is myasthenia gravis or thyroid issues, I don’t have double vision but, I had normal eyes before but now this ruined my self esteem and I hate how I look which put me in a long depression, I really hope I can fix this..
Try Oxymetazoline Hydrochloride Eye-Drops
1%
Was your diplopia constant or intermittent?
I have Graves’ disease and myasthenia symptoms. I don’t know why but it seems that Graves/thyroid issues come hang in hand with MG. Did you test positive for MG in bloodwork?
Yeah it is not uncommon to have both. Yes, I tested positive for both on anti bodies
Wow I hope you’re still remission. Best wishes
@@IvanaGirl I am. Thanks very much. How's it going for you?
MGAthlete not good I don’t know what this issue with swallowing is. It is either neurological or a stomach thing. I will keep you posted and you keep us posted too please!
i think after 3 years and a lot of self isolation i know what i have... bc of your video
im shooooookkkk
was diagnosed with mg august 2020although all tests mri, ct and ct with that liquid showed negetive for the disease but the eylid test with ice suggested mg. Double vision , droopy eyelids and eyeballs were fixed solid would not move. been on meds since september 2020 and pleased to say one of my lids are open but close from time to time but left eye lid still closed but sometimes open for about 15 / 20 mins a day, double vision still with me like the plague. been off work for 5 mo. good to see yours cleared up and yeah cant reallyl shave yet as cant see my face properly as eyes have not fully freed up yet. can anyone give me a rough guide on how long yours took to clear up, was hoping maybe to hear i should be fine by x y z
@Pablo Dc I don't think that's what did it. Do you like beef, butter, bacon, fish, or eggs? These are all foods one can live on. I can't say this enough, we don't need to eat plants, and we are much happier and healthier when we don't.
It's interesting, it looks like somebody replied to me. But it's not visible.
Hi Very Good Video, how is your diet?
Pretty good I think. But according to mainstream recommendations it may appear to be quite odd
It's been 3 years.. I'm suffering from MG.. it's very hard to live with this disease 😑 PLEASE.. GIVE ME SOME TIPS🙏
Hey Ravi, yeah it can be very hard. It's tough to give general tips, but I looked outsides medication to improve my health by improving mentally, learning about nutrition and then lifestyle. Its takes time, I try to cut stress out, eat quality food and then took time off work and found a better job. I will post more videos about each aspect to explain the details of what I did in context. Goodluck man
MGAththlete touches on this in his video: You need to learn to be able to read your body. I have had MG for 11 1/2 years. When I am getting near an exacerbation, my speech starts to slur, I start feeling a little out of breath even while seated, it will then progress to a dragging of a limb while walking. I have learned to rest as soon as I start feeling that numbing sensation in my mouth. Rest means rest.., not necessarily sleep, but a period of doing nothing. Your muscles need that to recover before the symptoms worsen. Listen to your body, Adhere to what it is saying, and then you will have met half of the battle.
You take Gravitor sr tablet and gravitor,doubt call 8939535548
@@antonysunil8874 yes..i take gravitor, mmf and wysolone
You go to MUTHU NEURO CENTRE,sugankadai,kanyakumari district
Anytime I go to the hospital they tell me they can't do any diagnosis... Even when I tell them my Dr believes I have kt
How are you holding up my friend?
My husband has had mg for four years, with no signs of improvement. Could you tell me what treatment or medication helped you improve and go into remission. We know of no doctors in SA who specialize in treating the disease.
Can you help me please? I'm from Myanmar ! This happened my life. now 6 months, In Our country is not enough medical for MG.
Did you have shortness of breath?
Can someone please advice how to get rid of double vision😢
I was diagnosed MG at 17 in 1987. I find both covid vaccinations and covid infections very much exacerbate my MG. Anyone else out there similar? Also I have chronic generalized fasciculations. Anyone else have these?
Hi ross
Please please help me I am from india
The doctors neurologist are crap here
My.mother has MG .but Musk antibodies
I dont want her getting on corticosteroid
I wanted to know did u do IVIG or Plasma
And also was ur diet plant based??
Please please please reply
Ross waiting for ur reply
I didn't use any of those meds or transfusions. I only used mestinon for a year or so.
I do not follow a plant based diet. I think animal products are an important source of nutrition. The main things I try follow are really limiting unsaturated fats, removing difficult to digest foods (raw leaves etc, and nuts/seeds). More info is in my top resources video
U spoke somethin of thryoid level.Do u have even a thyroid autoimmune disease?
Yes, I had autoimmune thyroid issues. I was diagnosed with Graves Disease (over active thyroid condition), but I think I actually have an under active thyroid now, and the over active symptoms/test results were just signs of extreme stress
Hello,
I was diagnosed with MG 2 years ago. What would be your recommendations(diet and exercises)? I am on meds but it seems to stop working. I am having double vision
Any advise would help
Thank you
If you seem my video about top resources where I mention the online copy of an MG book, that is sort of the basis for my eating. Low polyunsaturated fat, lower phosphorus relative to calcium, more glycine/gelatin rich proteins over methionine proteins, and then getting manganese rich foods in too.
I had a big focus on stress reduction in terms or diet (easier to digest foods), lifestyle (stopped studying and work for a bit), sleep/exercise/circadian rhythm (used to be awake at night a lot), and then relationships too
I think walking is more than enough exercise for most people, and then adjusting from there depending how much strength and energy I have.
@Pablo Dc what herbs did you used?
My right eye is beginning to not focus and drift on it's own and weakness is my eyelid, last week the doctor told me she believes I have MG and I can't explain it I walk down the street half way and my left leg feels like I worked out with heavy weights, I can't hold a book in one hand for 5 min. I go for cat scan to see if I have another eyes disorder. I hope I don't have MG and the cat scan explains my eyes issues. I have thyroid disease and take levothyroxine for 5 years now. If any one has any ideas or things to look for let me know.
What are the steps to follow for recover MG?
The's a big question. I did a lot and it's going to depend on each individual. But I learned a lot about diet, lifestyle, stress etc. and then changed a lot of things to get improvements. It takes time
Have u underwent thymectomy
Brother i m also a mg patient plzz help me by telling about the exercises i should do
There's no specific exercises. I think lowering stress is important, so sometimes overdoing exercise isn't helpful! I think walking and getting outside was really good for me
How you back to normal vision
Quite a few things all added together I think. If you find my video about top MG information sources, I mention a book and articles that I really learned from. I changed my diet quite radically, stopped working and studying to focus on recovery, and then slowly starting adding things back into my life, which I am still doing today. I focus on eating the best I can and lowering stress
Gone wrong .. My last question would be a problem with smoking cigarettes .. and did you consume the medicine first .. and please tell how long your problem was
Hs Hanif I don’t think smoking is healthy.
I took medication for a year and a half. I had symptoms for a few years
@@mgathlete1431 Brother Don't mind Don't be angry I'm having a very bad time You say 1 year 6 months Have you used any medications ... Brother
how can MG be diagnosed? it is hard to tell if im suffering from anxiety disorder or MG..because symptoms i can feel is heaviness in my head, inability to complete satisfying yawn, heaviness in some parts of body when standing, and my left eye twitch and somehow had pressure that weak.
MG is typically diagnosed by a blood test to test for acetylcholine antibodies or an Electromyography (EMG) test
@@mgathlete1431 z
Is there any correlation between this & Dystonia that anyone knows about? 😊
When you get double vision ,sit down ,cover one eye ,you will now not see double vision, ,do the same with the other eye ,cover the other , I noticed it would then stop double vision when you do , think of the best ,you have to wife's , lol. ❤️ It helps me.
Do you have take any medicine?
Definitely in the beginning. I stopped taking in 2016. But until I had recovered enough I took medication.
I have myasthenia gravis 10 years...
I hope things have improved for you!
Im an MG parient for 3 years.now on pyridosrigmine
@@behonest1463 are you use only pyridostigmine.. How many pills per day?
@@venkataramana3631 4 pills / day
60 mg
@@behonest1463 same i use 4 pills and 8mg mendrol,azoran 50mg per day
I am from Bangladesh saying brother help me I have been suffering from this disease for 1 year but did not do well. I am 18 years old Thymes Normal Anti Body Negative Please tell what to do as a groom's brother
Can't say what you should do. I just keep learning and adjusting. Lowering stress in terms of foods, lifestyle and environment
Sir i had droopy eyelid in the past but now i have recovered should i stop taking medication or continue it
N i was diagnosed with mg
That's something to decide with your doctor. And best to be under the care of a doctor when coming off medication
@@Surya-on1ci i take 3 distinon 6o mg 1 mycept 5oo mg and 2 tablets of tilstigmine !
@@Surya-on1ci 1 year and. A hf year
SIR, I AM FROM INDIA, AND RECENTLY CONFORMED MG AND I AM AGED ABOUT 60 YEARS, CAN I RETURNED TO NORMAL LIFE,
Sir im from Bangladesh my problam mg but only problam just eyes problam and double... 1 year runig medicin but no inbrove plz halp me
Work with a doctor. I then looked into my diet and lifestyle and tried to remove as much stress as possible. I limit process foods, mainly trying to avoid vegetable oils and eat the best quality foods I can afford. I takes time, but it gets better
Please tell what medicine you are consuming and what food you eat
@@hshanif3079 I don't use medicine anymore. I eat meat, eggs, dairy. Saturated fats (butter and coconut oil). fruits, honey, orange juice and well cooked vegetables. coffee.
Mainly trying to avoid polyunsaturated fats in my diet and foods that are difficult to digest too (which can be raw foods, salads, nuts and seed, grains not properly prepared).
It's going to be different for different people and depending on what foods are available and what one can afford to get
What tablut you take?please take Gravitor SR
@@antonysunil8874 pyrodosticmine 60 mg..
How did you get into remission?
It happens with some people only. Nothing can bring it on. MG is very varied among individuals.
I have had ptosis in one eye for 2 1/2 - 3 years. It’s not super super severe. I don’t appear to have any other symptoms. I do not have health insurance and can not afford testing. How long after I noticed the dropping eyelid would I have gotten the general symptoms? I am hoping if it is MG it is only in my eyes and doesn’t progress. What do you think??
That's difficult to say. Everyone's unique in there symptoms and whether they will progress or not. I would agree that one doesnt want it to progress as the eyes are bad enough, body weakness is debilitating!
It seems like you have had it in your eye for a long time and may not progress. mine progressed after 6 months
MGAthlete thanks for the reply. Also I want to mention that my eyelid dropping is only on one eye and only very little. Most people cannot tell until I show them and they compare them.
@@mgathlete1431
Hi Ross this is Vivaan
I have seen all.ur videos
My mother has MG all over from her facial muscles to the stomach muscles
It's very upsetting to see her struggle
She is only 40 .
I am 15 yrs old I am terrified
I wanted few answers please help .
Please let me know what kind of treatment did u take..IVIG ?plasma ?
Food she s on a plant based vegan diet
But seeing you I have hope please guide
Me I am from India and trust me the Neurologist here are Crap.
Why my voice affected? I can't talk.
Unfortunately that's 1 of the symptoms. I struggled with chewing and talking too. The jaw muscles get tired easily. Try rest and eat easier to chew foods
My swallowing difficulties then a weak voice were my primary symptoms before diagnosis alongside pain in the sternum. I beginning to think that these symptoms were stress related. Thankfully my GP realised I was going down hill rapidly and stepped in. Now I’m starting my journey of finding my new normal. Whatever that maybe. Remission is just a dream that I keep clinging on to.
I m ocular MG patient from age 3 and now I am 20 years old I can not even move my eyeballs 😭 plz help me
It's tough sometimes, but long term I think its possible to improve if one changes certain dietary and lifestyle factors to remove stress
😊
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