Mate, just wanted to say thanks for this video. My Dad was officially diagnosed just the other day after suffering a slow progression of MG over the last year. Symptoms hit every mark you described, barring the double vision. I showed him this video this morning and when the neurologist came to talk to him, we pretty much had a good understanding of everything that was going on.
Thank you for this, I am an MG warrior for a couple of years..I was down lately but this video reminds me that I am not alone.It gives me strength. God bless you
Wow, it's great to see that there are other people going through the same thing as yourself. I was diagnosed in August of 2019. Had a bad case of double vision and just thought it would get better on it's own (how foolish). Then BOOM! My entire left eyelid drooped overnight. After going to the ER, I saw a neuro-ophthalmologist and he pretty much diagnosed me on the spot. My symptoms were purely around my eye so I was considered to have Ocular Myasthenia. Taking prednisone now. Tapered from 60 to 2.5 mg. Symptoms pretty much gone, just some minor residual double vision when I force it from certain angles. Praying for better health. Good luck to you all and thanks for the video.
This is a great video and very helpful. I was diagnosed this past year,but I think I have had it for many years. Really looking forward to hearing more from you, thanks for clarifying things :) Information is hard to come by these days. I find the best way to learn is to share stories.
Thank you for the positive feedback :) I know exactly what you are saying. One of the reasons I want to share information is because I struggled to get good info when I was diagnosed! how are you doing now?
I was diagnosed in July 2021 at the age of 52 and it’s full on now. It’s affecting my legs so I fall a lot and the muscles of my face and neck. I have difficulty eating and swallowing. My left eye droops and I have glasses with a prism on them.
Ive had mg 2017 started with slurring and being unable to swallow. Progressed to mg distress (couldn't be revived after anaethsthetic)put on Mestinon, put on IVIG monthly (for life) 4 months later mg crisis (respiratory failure) generalized mg (legs and arms very weak) 12 month later mg distress( failure to revive after anathsetic) put on heaps of steroids, fastracked to Chemo. Cycclophate? after 6 month treatment seem to be in full remission, apart from legs (possibly other issues). Also MG crisis should occur within 7 years from onset of desease, if not , you could have the light MG without the crisis. MG crisis is 90% survivable. Cyclophate has long term side effects, in particular for women, your doctor will explain.
@@vladislavfeldman6562 good to hear from you. I had my first crisis in June and was in hospital with pneumonia. I still occasionally fall, but my biggest problems are eating, muscle weakness and tiredness. My eyesight is normal again and one morning out the blue I woke up and the droop was gone. I am on a 3 year medical driving license.
I’ve just been diagnosed with MG. Could you explain why you decided not to have your thymus removed? Also, what foods are best for recovery? You’ve inspired me to beat this and i will ☺️
I considered a few factors. I saw the results that people were getting after the operation and a lot still got worse. I read some things saying that the thymus gland is still a necessary organ even in adulthood. A book on MG that I reference in my top resources video said that people could have a full natural recovery if they still had their thymus gland, but it was harder to have a full recovery without the thymus. The book also speaks about how MG patients enlarged thymuses returned to normal size with the correct nutrients. So I tried that, and mine shrunk and went back to normal after a few years.
How long did it take for your eye to open up and return to normal? I was diagnosed July 2021 and just this week 21 July 23 my eye has returned to normal.
Thank you very much for the video. I was diagnosed with MG four months ago and have been on Mestinon. At this point, I'm just experiencing droopy eye and double vision. I'm taking 1/2 tablet four times a day and it takes care of 90% of the symptoms. I'm thinking that if my doctor recommends removing the thymus, I'll decline because I'm not a fan of just removing body parts. To me, it's like having an engine light come on in the dashboard of my car and removing the bulb to get rid of the problem. There must be a better solution. I'm curious about your reasoning for deciding not to remove your thymus.
Hey John. I'm glad it was useful. My personal decision to not have it removed was because I don't think that organs don't have a function. I have read that the thymus is still important in adults to process manganese and in animals studies where they removed the thymus, they significantly got weaker. I also thought that, I could always have it taken out later if I really NEEDED to, but I can't change my decision if I have it taken out. I also saw the results of people who had had the operation, and the stats didn't look great to me so I tried another way. I like your analogy, and I also think symptoms are telling one that something is wrong.
@@mgathlete1431 Yes, I too think every organ has a function, so at this point, I'm not going to fool with my thymus. I also recall seeing some stats that indicate removal of the thymus is not optimal. I'll hang onto mine for a while longer. While I'm taking Mestinon, I'm also being treated by a homeopathic doctor who has prescribed some natural herbs. It's only been a few weeks, so I'm not noticing any improvement, but I'm also not noticing any worsening of symptoms. I'll try to keep you updated on any progress with the homeopathic route. All my best to you on your journey with this strange malady.
I’m just so nervous if a symptom like difficulty swallowing and speech issues might progress more to some issues like drooping eyelids, difficulty in walking, and double vision. :( Although, we are under maintenance medication now with mestinon, and I hope the symptoms won’t progress or worsen :(
I had all of those symptoms droppy eyelids difficulty eating and talking double vision weakness of joints ....one I have to take 4 times a day d other one six in the morning but even on the medication I still feel the weakness in the joints especially in the hands and I can't lift anything too heavy and I have been on medication 3 years now ..... I had it from I was 18 now am 21 ,😭😭
Hi you are not on meds any more? Are your symptoms gone? My symptoms keeps on coming back. I don't have a problem with taking my treatment but how do i let go of symptoms and i shake alot. I was diagnosed September 2020
d9 you have a prounounced double vision problem? \between the double vision and the feeling that my fave muscles want to go to the floor.. I also have Inclusion bODY Myositis which affects everything else. GGRRR
Hey David. I used to have a double vision problem that was bad! Fortunately, I don't have it anymore. Sorry to hear about your symptoms, it can be really tough! I hope it gets better for you
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...my only problam eys
Mate, just wanted to say thanks for this video. My Dad was officially diagnosed just the other day after suffering a slow progression of MG over the last year. Symptoms hit every mark you described, barring the double vision. I showed him this video this morning and when the neurologist came to talk to him, we pretty much had a good understanding of everything that was going on.
That's awesome Kenyon. So glad it was helpful! Sorry about your dad, hope everything goes well with him.
Thank you for this, I am an MG warrior for a couple of years..I was down lately but this video reminds me that I am not alone.It gives me strength. God bless you
Obrigado pelo vídeo, meu esposo foi diagnosticado a meses atrás, primeira vez que encontro um vídeo completo.
Wow, it's great to see that there are other people going through the same thing as yourself. I was diagnosed in August of 2019. Had a bad case of double vision and just thought it would get better on it's own (how foolish).
Then BOOM! My entire left eyelid drooped overnight. After going to the ER, I saw a neuro-ophthalmologist and he pretty much diagnosed me on the spot.
My symptoms were purely around my eye so I was considered to have Ocular Myasthenia. Taking prednisone now. Tapered from 60 to 2.5 mg. Symptoms pretty much gone, just some minor residual double vision when I force it from certain angles. Praying for better health. Good luck to you all and thanks for the video.
Glad you getting on top of it! I hope you keep improving
This is a great video and very helpful. I was diagnosed this past year,but I think I have had it for many years. Really looking forward to hearing more from you, thanks for clarifying things :) Information is hard to come by these days. I find the best way to learn is to share stories.
Thank you for the positive feedback :) I know exactly what you are saying. One of the reasons I want to share information is because I struggled to get good info when I was diagnosed! how are you doing now?
Thanks for the info, it's only because a friend of mine was diagnosed with it this week I know about it. Thank you.
Great breakdown!!
Thank you!
No problem Sid. Thanks for the comment
I was diagnosed in July 2021 at the age of 52 and it’s full on now. It’s affecting my legs so I fall a lot and the muscles of my face and neck. I have difficulty eating and swallowing. My left eye droops and I have glasses with a prism on them.
Ive had mg 2017 started with slurring and being unable to swallow. Progressed to mg distress (couldn't be revived after anaethsthetic)put on Mestinon, put on IVIG monthly (for life) 4 months later mg crisis (respiratory failure) generalized mg (legs and arms very weak) 12 month later mg distress( failure to revive after anathsetic) put on heaps of steroids, fastracked to Chemo. Cycclophate? after 6 month treatment seem to be in full remission, apart from legs (possibly other issues). Also MG crisis should occur within 7 years from onset of desease, if not , you could have the light MG without the crisis. MG crisis is 90% survivable. Cyclophate has long term side effects, in particular for women, your doctor will explain.
@@vladislavfeldman6562 good to hear from you. I had my first crisis in June and was in hospital with pneumonia. I still occasionally fall, but my biggest problems are eating, muscle weakness and tiredness. My eyesight is normal again and one morning out the blue I woke up and the droop was gone. I am on a 3 year medical driving license.
I’ve just been diagnosed with MG. Could you explain why you decided not to have your thymus removed? Also, what foods are best for recovery? You’ve inspired me to beat this and i will ☺️
I considered a few factors. I saw the results that people were getting after the operation and a lot still got worse. I read some things saying that the thymus gland is still a necessary organ even in adulthood. A book on MG that I reference in my top resources video said that people could have a full natural recovery if they still had their thymus gland, but it was harder to have a full recovery without the thymus. The book also speaks about how MG patients enlarged thymuses returned to normal size with the correct nutrients. So I tried that, and mine shrunk and went back to normal after a few years.
Myasthenia gravis and recovery. Ads I've with food India
How long did it take for your eye to open up and return to normal? I was diagnosed July 2021 and just this week 21 July 23 my eye has returned to normal.
Thank you very much for the video. I was diagnosed with MG four months ago and have been on Mestinon. At this point, I'm just experiencing droopy eye and double vision. I'm taking 1/2 tablet four times a day and it takes care of 90% of the symptoms. I'm thinking that if my doctor recommends removing the thymus, I'll decline because I'm not a fan of just removing body parts. To me, it's like having an engine light come on in the dashboard of my car and removing the bulb to get rid of the problem. There must be a better solution. I'm curious about your reasoning for deciding not to remove your thymus.
Hey John. I'm glad it was useful. My personal decision to not have it removed was because I don't think that organs don't have a function. I have read that the thymus is still important in adults to process manganese and in animals studies where they removed the thymus, they significantly got weaker. I also thought that, I could always have it taken out later if I really NEEDED to, but I can't change my decision if I have it taken out. I also saw the results of people who had had the operation, and the stats didn't look great to me so I tried another way.
I like your analogy, and I also think symptoms are telling one that something is wrong.
@@mgathlete1431 Yes, I too think every organ has a function, so at this point, I'm not going to fool with my thymus. I also recall seeing some stats that indicate removal of the thymus is not optimal. I'll hang onto mine for a while longer.
While I'm taking Mestinon, I'm also being treated by a homeopathic doctor who has prescribed some natural herbs. It's only been a few weeks, so I'm not noticing any improvement, but I'm also not noticing any worsening of symptoms. I'll try to keep you updated on any progress with the homeopathic route.
All my best to you on your journey with this strange malady.
I’m just so nervous if a symptom like difficulty swallowing and speech issues might progress more to some issues like drooping eyelids, difficulty in walking, and double vision. :( Although, we are under maintenance medication now with mestinon, and I hope the symptoms won’t progress or worsen :(
Yeah, unfortunately often the symptoms do progress, but not always.
I had all of those symptoms droppy eyelids difficulty eating and talking double vision weakness of joints ....one I have to take 4 times a day d other one six in the morning but even on the medication I still feel the weakness in the joints especially in the hands and I can't lift anything too heavy and I have been on medication 3 years now ..... I had it from I was 18 now am 21 ,😭😭
In how much time your MG was reversed plus was it Ach positive. Can we talk on call relating to myasthenia?
Hi you are not on meds any more? Are your symptoms gone? My symptoms keeps on coming back. I don't have a problem with taking my treatment but how do i let go of symptoms and i shake alot. I was diagnosed September 2020
d9 you have a prounounced double vision problem? \between the double vision and the feeling that my fave muscles want to go to the floor.. I also have Inclusion bODY Myositis which affects everything else. GGRRR
Hey David. I used to have a double vision problem that was bad! Fortunately, I don't have it anymore. Sorry to hear about your symptoms, it can be really tough! I hope it gets better for you
Oo
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...my only problam eys
Can't say what you should do. I just keep learning and adjusting. Lowering stress in terms of foods, lifestyle and environment
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
Yes initially I used Mestinon. But have been off medications for a few years now