Hello my name is Christopher I'm 19 now and I was diagnosed with Myasthenia Gravis 15yrd started in 07 with a druppy eyelid then weakness in my leg by then I left the football team begin looking for help. I had my thymus removed already and i did notices a difference no one in my family has it just me.
Hi. my name is Geir and I have lived with MG for 37 years. I am now 46 and doing fine. Have good results with strict diets. Any questions: my emailedr. is :Superbudet@gmail.com
@Geirh65 I'd like to know more about your diet. Does it really help with mg? I eat pretty much what I want but would be more careful if it would help. The treatment I'm getting is very good where mg is concerned but causes muscle cramps. It is very painful.
@gregry111 I have found that MG pacients often suffer from some kind of food allergy often without knowing. MG can also affect the digestive system. IN my case not eating dairy products and bread from wheat has helped a lot
@Geirh65 Sounds like you might have a problem with gluten too. My son has that. I have never noticed any food allergy. Of course that does not mean I don't have it and am not aware of it. I feel very healthy except for having diabetes and mg. Like I said, with my treatment, I seem to have no symptoms of mg. My main problems seem to be from my treatment. I remember my grandmother talking about muscle cramps from her treatment too. By the way she lived to be 91 and had had mg since her 60's.
Hi ya,, I want to thank you for explaining it so well, you worded it perfect, ok I have MG since 2002 the doctors told me my children safe me from getting worse, after my 2nd child I found that I had no feeling in my arms my eyes closed up I lost a lot of weight, and had double vision, it was dread full,, my speech went could talk properly, and I was dying, I went hospital had a load of test, blood transfusion, and a big bag of medication, I also went for and operation,, this was 2007, were in
@LADYBREWC I have MG to since about 2003.im always tired and my right eye droops.all im taking is mestinon 2 pills every 4 hours..It sounds like your situation is a little more intense then mine but if you ever want to vent.let me know.im here for you.Peace Desiree.
I am 16 years old, and I also have Myasthenia Gravis. It's amazing to know that there are others just like me [i'm getting all emotional about it.] I had a thymectomy during the summer, I believe? The surgery wasn't open chest or throat, if i'm explaining it right, but I had three incisions on my left side to pull it out. I thank God every day for letting the scars be small. I say to my friends that i had a battle with Wolverine lol. So far, no change; however, I will not stop praying. :D
I have myasthenia as well.. for the longest time I got told I was "crazy" and "drug seeking" FINALLY I found doctors and neurologists who really LISTENED ordered the proper tests and well.... now I know what I have and it's such a relief!
Thank you for sharing your story. I, too, am a nursing student. This helps me to "see" myasthenia gravis better. I am going to tell my fellow classmates about this video. I would love an update if possible. My prayers are with you.
thankyou for sharing this video. Im a nursing student studying for boards, your video made me visualize your symptoms, I wish you best of luck and a long prosperous life ahead of you.
I am 43, I had my thymus removed when I was 13. I've been on and off Mestinon and Prednisone since then. When I was young the effects of the medication only lasted for a few hours before I got weak again. Now I can go long periods without it, as long as a year. I only take the medicine when i get real weak, then when I get my strength I lay off of it. But for me the prednisone and mestinon together put me almost at normal, I just think you have to be taking the right dosage for you stage.
Thank you for sharing your story. I am in nursing school and hearing from you about your personal account helps take the literature from my text and bring it to life. You are a brave woman and I wish you the best quality of time. Please continue with your posts as you are teaching others and making a difference.
I've had MG for about three years and I'll tell you what, I hate it. Before I was diagnosed it was bad. My neck was really weak, my eyelids drooped. I couldn't talk for more then a couple minutes at a time, and my hands were useless. Once I got on medications things did get better, so much my doctor took me off Prednisone. Unfortunately the weakness in my hands came back full force a short while after. Now I'm back on Prednisone waiting for it to take effect again.
I have not heard of this until today on the radio. A local radio personality by the name of "Uncle Fester" on 93.3 WFLZ here in Tampa, Florida last week came down with strange symptoms. He would up in the hospital and is now in intensive care being treated for this.
Hello my mother has myasthenia Gravis also. Take a look at her website and let us know if you have taken the same kinda medication as she is trying to get.
Ther is hope for MG, my son was 6 years old when he got really sick with Myasthenia Gravis, and he had the Thymectomy in 2006 since than he has been ok. Read his story on it's called "Bradley's Myasthenia Gravis" and is featured on Squidoo
Thank you for sharing your experience. I am facing a possible diagnosis for myasthenia gravis from my neuro. I have the same symptoms you have and I am looking for any information regarding this.
@lndmkmy There is a Hevnawe naturopathic approach that deals with Myasthenia Gravis. It should still be posted on my channel in the comment section, if not then email me and it will be reposted.
It's me again. Just a question for anyone who knows. I have not seen my mom experience that eye weakening symptom yet. She says she has not experience it. She also experiences a type of foot seizure. She believes they are babinski episodes. Does one with MG always experience the eye weakness and does anyone experience foot contortions? Thanks again.
@seddy91321 I have myasthenia gravis and i always have eye weakness and double vision. Physically i am doing better but the eye is my main problem right now, i don't have any problems with my foot, it seems to me symptoms are different for certain people.
@mogana20 I have the same symptoms as you have.... I was diagnosed 4 years ago and now my only problem is eye weakness and double visions that comes and goes.......what have you done so far because I am really itnerested to hear from other people that have the same problem. Thank you and please you don't have to answer me if you don't.... I hope you do well.....:)
@neadaermir1 Well i am taking full time classes in college right now so i really fill like that's why my eyesight is still a problem. I see my doctor at least every 2 months and she says that i am improving rapidly but that my eye is still a mistery. Right now she has me on 25mg of prednisone and i take mestinol when needed. But my eyesight now is great compared to last year when before gettting a thymectomy.
@mogana20 so I guess we are in the same situation.... I am a full time college student as well... I had a thymectomy in 2007 and I am currently taking 15 mg prednisone and mestinon 4 times a day.... I was diagnosed with it 4 years ago and I am much better than I used to be.... thank god.... the only problem as you said is the double vision sometimes that interferes with my daily activities and you can understand me like nobody else can.... soo.... well thanks for sharing it with me...:)
@seddy91321 My first symptom was a droopy right eyelid. After I began treatment my feet began to cramp while asleep. I attribute this to the Pyrodostigmine. Place your foot flat on the floor and then lift the front of your foot off the ground, it's the muscle you use to do that which cramps. Right? I have that and it really hurts but I think it's from my medication not from the disease. I take Colonozepam and it helps at first but I build up a tolerance to it and the cramps come back.
My mom just got tested for MG two days ago. It will be a few weeks before we know the results. At first she thought it might be ALS. We have not totally ruled out ALS, but are hoping for something treatable. I must admit, I have had strong thoughts that her symptoms are psychosymatic. It seems so weid to me that one day she could go dancing (and she is quite the dancer) and the next day she can hardly talk, eat or put on clothes. This makes more sense. Thanks for sharing.
Oh wow I will pray for you,,, My mother was just recently diagnosed with Myasthenia Gravis too and she has double vision and weakness in her hands, arms and legs. It was getting so bad to the point she couldn't walk or lift her arms basically she couldn't move or do anything. But after being diagnosed and being put on medication she is doing okay or as to be expected. I had never heard of this until I found out she had it. I was trying to find more info on it and found you're video.
Dr. Stephane Huberty, a scientist in Belgium, is developing a vaccine for MG. It is ready for phase 1 clinical trials. The BBC and the Wall Street Journal have both recently interviewed Dr. Huberty. If you are interested in it, follow @myasthenic on Twitter or Google Curavac. You can find the links to the articles and interviews on the website.
@acorsi1881 well what can i say each pregnancy was diffrent the first one was great,the second one i had breathing problems and started prednisone that started alot of medical problems and the third one well that one was the hardest through pregnancy and after. I had a crisis one day after birth.but still greatfull that i have my children.
Hi, it's Bruce. I've watched all your videos as you progress through MG and want to say you are so very brave. Listening to your first video brought tears to my eyes and I just wanted to hold you forever. You're a STRONG woman and I know you will beat this! I will continue to watch these videos and see that you will go through this with the positive "I'm gonna whip this" attitude of yours. Hang in there, Karin. Love, BF...
FIrst may God bless you and keep you strong! I have MG since i was 13 and now i am 22. I had the thymectomy when i was 16 and it worked very good for me for 4 years, the best time of my life with MG. I danced, work out, college life i had a normal life. Now i am a little bit struggling with my ocular MG because my body is very strong GLory to JESUs because i know he is the one who keeps me strong against all adds.
IF anyone have any questions about Mg please send me a message. God bless you!
Wonderfully informative videos! Thank God I found these, it has helped me understand so much! I just wanted to say thank-you for sharing something so personal with the world so that others can learn. God bless you & your family & take care!
@selenagomez1966 There is a Hevnawe naturopathic approach that deals with Myasthenia Gravis. It should still be posted on my channel in the comment section, if not then email me and it will be reposted.
I still have hope though. i'm a nursing student getting ready to graduate and MG is defintly taking its toll on me.. I hope all goes well with you and your surgery.
oh, this is my little brothers youtube account. I dont have one of my own
I also have MG. I was diagnosed when I was 9 years old and I am now 19 going on 20 in a few months and having a tough time dealing with MG. My symptoms seem to fluctuate. I can be feeling so good for several months while on high doses of prednisone but now my doctor is tapering it, my symptoms are coming back, similar to the ones you mentioned in your video. I had a thymectomy done 2 years ago and unfortunatly did not work for me
@MrAndamonium: That is terrible that they removed your thymus. All this does is give you a short relief from the Sx's, but only to return later. Not to mention it creates an even worse imbalance with your immune system.
I take mestinon however it only helps some. I have to take a IV treatement every 2 weeks or I start to see sympthoms return. And I sleep alot as it really helps.
I also have Mg and im 35 years old, thank you for this video, and I so what you mean before mestinon I couldnt even walk let alone hold my head up I have a bunch of videos on it also go look we prob have the same mg, take care
I have MG and had many of the same sympthoms you have. But the way it was diagonosed was when I could not hold my head up. And once I started IV treatments- Holding my head up was the first thing to come back. And now I can chew and swallow very good. I can even eat a Subway sandwich.
I have Myasthenia Gravis too and feel fine except that I have really bad side effects from my medicine (Pyrodostigmine)
gregry111 1 week ago
u look great for 40, very milfy
kirkferentzrocks 2 weeks ago
Hello my name is Christopher I'm 19 now and I was diagnosed with Myasthenia Gravis 15yrd started in 07 with a druppy eyelid then weakness in my leg by then I left the football team begin looking for help. I had my thymus removed already and i did notices a difference no one in my family has it just me.
CBPhotogs 1 month ago
Hi. my name is Geir and I have lived with MG for 37 years. I am now 46 and doing fine. Have good results with strict diets. Any questions: my emailedr. is :Superbudet@gmail.com
Geirh65 2 months ago in playlist Flere videoer fra Thekarinski69
@Geirh65 I'd like to know more about your diet. Does it really help with mg? I eat pretty much what I want but would be more careful if it would help. The treatment I'm getting is very good where mg is concerned but causes muscle cramps. It is very painful.
gregry111 1 week ago
@gregry111 I have found that MG pacients often suffer from some kind of food allergy often without knowing. MG can also affect the digestive system. IN my case not eating dairy products and bread from wheat has helped a lot
Geirh65 1 week ago
@Geirh65 Sounds like you might have a problem with gluten too. My son has that. I have never noticed any food allergy. Of course that does not mean I don't have it and am not aware of it. I feel very healthy except for having diabetes and mg. Like I said, with my treatment, I seem to have no symptoms of mg. My main problems seem to be from my treatment. I remember my grandmother talking about muscle cramps from her treatment too. By the way she lived to be 91 and had had mg since her 60's.
gregry111 1 week ago
Hi ya,, I want to thank you for explaining it so well, you worded it perfect, ok I have MG since 2002 the doctors told me my children safe me from getting worse, after my 2nd child I found that I had no feeling in my arms my eyes closed up I lost a lot of weight, and had double vision, it was dread full,, my speech went could talk properly, and I was dying, I went hospital had a load of test, blood transfusion, and a big bag of medication, I also went for and operation,, this was 2007, were in
LADYBREWC 2 months ago
This has been flagged as spam show
@LADYBREWC I have MG to since about 2003.im always tired and my right eye droops.all im taking is mestinon 2 pills every 4 hours..It sounds like your situation is a little more intense then mine but if you ever want to vent.let me know.im here for you.Peace Desiree.
Desiree50able 2 months ago
I am 16 years old, and I also have Myasthenia Gravis. It's amazing to know that there are others just like me [i'm getting all emotional about it.] I had a thymectomy during the summer, I believe? The surgery wasn't open chest or throat, if i'm explaining it right, but I had three incisions on my left side to pull it out. I thank God every day for letting the scars be small. I say to my friends that i had a battle with Wolverine lol. So far, no change; however, I will not stop praying. :D
MsCookiemonster1995 2 months ago 2
I have myasthenia as well.. for the longest time I got told I was "crazy" and "drug seeking" FINALLY I found doctors and neurologists who really LISTENED ordered the proper tests and well.... now I know what I have and it's such a relief!
IdolSearchAngela 3 months ago
This has been flagged as spam show
Thanks for sharing!
Try to treat with Colostrum
iherb.com/Symbiotics-Colostrum-Plus-Powder-21-oz-595-3-g/4091?at=0
It helps! You can use discount code BIK041 and get $5 off. There is no shipping or minimal to many countries.
beb4o2008 3 months ago
You're forty? You look great!
DJstoopnig 3 months ago
Thank you for sharing your story. I, too, am a nursing student. This helps me to "see" myasthenia gravis better. I am going to tell my fellow classmates about this video. I would love an update if possible. My prayers are with you.
alwaysfamilyfirst 4 months ago
thankyou for sharing this video. Im a nursing student studying for boards, your video made me visualize your symptoms, I wish you best of luck and a long prosperous life ahead of you.
mgulraiz 5 months ago
you're an excellent speaker. I wish you the best.
Andearea 5 months ago
Comment removed
kingsofthezone15 5 months ago
I am 43, I had my thymus removed when I was 13. I've been on and off Mestinon and Prednisone since then. When I was young the effects of the medication only lasted for a few hours before I got weak again. Now I can go long periods without it, as long as a year. I only take the medicine when i get real weak, then when I get my strength I lay off of it. But for me the prednisone and mestinon together put me almost at normal, I just think you have to be taking the right dosage for you stage.
kingsofthezone15 5 months ago
@kingsofthezone15 It's amazing to know that you are better than before. I just hope that I have as much of a success as you did. :D
MsCookiemonster1995 2 months ago
Thank you for posting this. I hope you have been feeling better after the surgery.
shmoobz 7 months ago
Thank you for sharing your story. I am in nursing school and hearing from you about your personal account helps take the literature from my text and bring it to life. You are a brave woman and I wish you the best quality of time. Please continue with your posts as you are teaching others and making a difference.
swiftywoman 8 months ago
I've had MG for about three years and I'll tell you what, I hate it. Before I was diagnosed it was bad. My neck was really weak, my eyelids drooped. I couldn't talk for more then a couple minutes at a time, and my hands were useless. Once I got on medications things did get better, so much my doctor took me off Prednisone. Unfortunately the weakness in my hands came back full force a short while after. Now I'm back on Prednisone waiting for it to take effect again.
regeice 8 months ago
I have not heard of this until today on the radio. A local radio personality by the name of "Uncle Fester" on 93.3 WFLZ here in Tampa, Florida last week came down with strange symptoms. He would up in the hospital and is now in intensive care being treated for this.
JamesWorley 9 months ago
ask your neurologist about huperzine a. its another acetylcholinesterase inhibitor
aysixtiri 1 year ago
Hello my mother has myasthenia Gravis also. Take a look at her website and let us know if you have taken the same kinda medication as she is trying to get.
wix.com/sylvie_26/mg
putka101 1 year ago
Ther is hope for MG, my son was 6 years old when he got really sick with Myasthenia Gravis, and he had the Thymectomy in 2006 since than he has been ok. Read his story on it's called "Bradley's Myasthenia Gravis" and is featured on Squidoo
, it will give you hope!
ftuley 1 year ago
Thank you for sharing your experience. I am facing a possible diagnosis for myasthenia gravis from my neuro. I have the same symptoms you have and I am looking for any information regarding this.
lndmkmy 1 year ago
@lndmkmy There is a Hevnawe naturopathic approach that deals with Myasthenia Gravis. It should still be posted on my channel in the comment section, if not then email me and it will be reposted.
4chango 6 months ago
I Hate this disease...
StinkySasha1 1 year ago
i have MG and i dont have all those semtims but i have alot of truble with alot of dr.s too
addyhippos 1 year ago
Hi,
It's me again. Just a question for anyone who knows. I have not seen my mom experience that eye weakening symptom yet. She says she has not experience it. She also experiences a type of foot seizure. She believes they are babinski episodes. Does one with MG always experience the eye weakness and does anyone experience foot contortions? Thanks again.
seddy91321 1 year ago
@seddy91321 I have myasthenia gravis and i always have eye weakness and double vision. Physically i am doing better but the eye is my main problem right now, i don't have any problems with my foot, it seems to me symptoms are different for certain people.
mogana20 1 year ago
@mogana20 I have the same symptoms as you have.... I was diagnosed 4 years ago and now my only problem is eye weakness and double visions that comes and goes.......what have you done so far because I am really itnerested to hear from other people that have the same problem. Thank you and please you don't have to answer me if you don't.... I hope you do well.....:)
neadaermir1 1 year ago
@neadaermir1 Well i am taking full time classes in college right now so i really fill like that's why my eyesight is still a problem. I see my doctor at least every 2 months and she says that i am improving rapidly but that my eye is still a mistery. Right now she has me on 25mg of prednisone and i take mestinol when needed. But my eyesight now is great compared to last year when before gettting a thymectomy.
mogana20 1 year ago
@mogana20 so I guess we are in the same situation.... I am a full time college student as well... I had a thymectomy in 2007 and I am currently taking 15 mg prednisone and mestinon 4 times a day.... I was diagnosed with it 4 years ago and I am much better than I used to be.... thank god.... the only problem as you said is the double vision sometimes that interferes with my daily activities and you can understand me like nobody else can.... soo.... well thanks for sharing it with me...:)
neadaermir1 1 year ago
@seddy91321 My first symptom was a droopy right eyelid. After I began treatment my feet began to cramp while asleep. I attribute this to the Pyrodostigmine. Place your foot flat on the floor and then lift the front of your foot off the ground, it's the muscle you use to do that which cramps. Right? I have that and it really hurts but I think it's from my medication not from the disease. I take Colonozepam and it helps at first but I build up a tolerance to it and the cramps come back.
gregry111 1 week ago
My mom just got tested for MG two days ago. It will be a few weeks before we know the results. At first she thought it might be ALS. We have not totally ruled out ALS, but are hoping for something treatable. I must admit, I have had strong thoughts that her symptoms are psychosymatic. It seems so weid to me that one day she could go dancing (and she is quite the dancer) and the next day she can hardly talk, eat or put on clothes. This makes more sense. Thanks for sharing.
seddy91321 1 year ago
Comment removed
adam15ND 1 year ago
Oh wow I will pray for you,,, My mother was just recently diagnosed with Myasthenia Gravis too and she has double vision and weakness in her hands, arms and legs. It was getting so bad to the point she couldn't walk or lift her arms basically she couldn't move or do anything. But after being diagnosed and being put on medication she is doing okay or as to be expected. I had never heard of this until I found out she had it. I was trying to find more info on it and found you're video.
alliehazelangel 1 year ago
Dr. Stephane Huberty, a scientist in Belgium, is developing a vaccine for MG. It is ready for phase 1 clinical trials. The BBC and the Wall Street Journal have both recently interviewed Dr. Huberty. If you are interested in it, follow @myasthenic on Twitter or Google Curavac. You can find the links to the articles and interviews on the website.
myasthenicontwitter 1 year ago
you say thaht your dad and granfather had mg, so is mg is hereditary because ive had it since 12yrs old and have three kids.
brenda1426 1 year ago
@brenda1426 ,,, hi I have had MG since i was 14yrs and was wondering what happened to you when you had your children
acorsi1881 1 year ago
@acorsi1881 well what can i say each pregnancy was diffrent the first one was great,the second one i had breathing problems and started prednisone that started alot of medical problems and the third one well that one was the hardest through pregnancy and after. I had a crisis one day after birth.but still greatfull that i have my children.
brenda1426 1 year ago
check out marshallprotocol
maciejwrotek 1 year ago
Karin,
Hi, it's Bruce. I've watched all your videos as you progress through MG and want to say you are so very brave. Listening to your first video brought tears to my eyes and I just wanted to hold you forever. You're a STRONG woman and I know you will beat this! I will continue to watch these videos and see that you will go through this with the positive "I'm gonna whip this" attitude of yours. Hang in there, Karin. Love, BF...
bflorenc1 1 year ago
FIrst may God bless you and keep you strong! I have MG since i was 13 and now i am 22. I had the thymectomy when i was 16 and it worked very good for me for 4 years, the best time of my life with MG. I danced, work out, college life i had a normal life. Now i am a little bit struggling with my ocular MG because my body is very strong GLory to JESUs because i know he is the one who keeps me strong against all adds.
IF anyone have any questions about Mg please send me a message. God bless you!
Godsbutterfly20 1 year ago
Wonderfully informative videos! Thank God I found these, it has helped me understand so much! I just wanted to say thank-you for sharing something so personal with the world so that others can learn. God bless you & your family & take care!
TheRonaldchristian 1 year ago
my mom has it and ms
selenagomez1966 1 year ago
This has been flagged as spam show
@selenagomez1966 There is a Hevnawe naturopathic approach that deals with Myasthenia Gravis. It should still be posted on my channel in the comment section, if not then email me and it will be reposted.
4chango 6 months ago
thank you for shareing your story you are a link on my page for heatherboo74 thanks you again take care
feath123production 1 year ago
I still have hope though. i'm a nursing student getting ready to graduate and MG is defintly taking its toll on me.. I hope all goes well with you and your surgery.
oh, this is my little brothers youtube account. I dont have one of my own
MrAndamonium 1 year ago
I also have MG. I was diagnosed when I was 9 years old and I am now 19 going on 20 in a few months and having a tough time dealing with MG. My symptoms seem to fluctuate. I can be feeling so good for several months while on high doses of prednisone but now my doctor is tapering it, my symptoms are coming back, similar to the ones you mentioned in your video. I had a thymectomy done 2 years ago and unfortunatly did not work for me
All the best to the other MG patients
MrAndamonium 1 year ago
@MrAndamonium: That is terrible that they removed your thymus. All this does is give you a short relief from the Sx's, but only to return later. Not to mention it creates an even worse imbalance with your immune system.
4chango 6 months ago
I take mestinon however it only helps some. I have to take a IV treatement every 2 weeks or I start to see sympthoms return. And I sleep alot as it really helps.
jrlaven48 2 years ago
I also have Mg and im 35 years old, thank you for this video, and I so what you mean before mestinon I couldnt even walk let alone hold my head up I have a bunch of videos on it also go look we prob have the same mg, take care
heatherboo74 2 years ago
I have MG and had many of the same sympthoms you have. But the way it was diagonosed was when I could not hold my head up. And once I started IV treatments- Holding my head up was the first thing to come back. And now I can chew and swallow very good. I can even eat a Subway sandwich.
jrlaven48 2 years ago