Thymectomy and Myasthenia Gravis: A Clinical Challenge (MGTX)

[slueth88]

I was 19, am now 54, 35 years of MG. I climbed mountains and did hard work through hard work. Feel wore out now. There were ups and downs, almost remission-like at times. Now I feel as though I am prisoner of my laziness.

[sasagirl333]

i just got out of the hospitel i had the thyectomy and im only 13

[facialsbyapril]

I am 44 got diagnosed when I was 15. Had thymectony when I was 16, and now recieve IVIG every month in the hospital for 3 days. I have positive attitude, and have never been in remission..

[slucru]

@facialsbyapril I am so sorry to hear that you have had this kind of struggle. We are planning to do a clinical trial with IVIG in which patients administer the IVIG to themselves into the fat on their stomach every month. Let me know if you are interested in participating in a study like this.

[slucru]

@facialsbyapril I am so sorry to hear that you have had this kind of struggle. We are planning to do a clinical trial with IVIG in which patients administer the IVIG to themselves into the fat on their stomach every month. Let me know if you are interested in participating in a study like this.

[slucru]

@facialsbyapril Please provide me with your contact information, I can send the information to you in the mail so that you may read about it. There will be only three centers in the United States doing this, and I can let you know if you will be close to one. We will not be starting the study for several months. If you would prefer to speak with me by telephone, you can call me at 314-977-4871. Eve

[mogana20]

Am getting my thymectomy march 9 can't wait to get it over with.

[papasprice]

im a 31 year old male and i hhave been dealing w mg for about 3 months now i am presently experiencing just about every possible symptom mg has to offer lol i researched other people w mg and have not found a candidated w the same gender and age as myself how rare do you think that is. is there anyone out there like me?

[juliandahooligan]

Hi Papasprice,

YES

I am a male with MG and 31 on the 6th December and have had MG since 2004. Like many when first diagnosed i was bedridden and in a wheelchair for nearly a year. Couldnt chew, swallow, hold a mouthful of water, hold a pen, scratch my own nose, sit up by myself etc etc

Much, much better now than what i was..........things do and will get much much better mate!

Stay strong

[TheVoiceof1crying]

I had a thymectomy 2 years ago, I read if i get better it could take 2 to 5 years to see te results, mean while, on the meds and ivig every 2 months.

But hey, could be worse ! God bless all.

One day we'll get a break,

[sallyWKU]

Hi I got MG. the doctors think i got it when i was about 5-6 years old. i got my diagnose when i was 12 ( a long and hard childhood- being told that i was lazy-and starding to beleve it! i still work with the issues it left) and had a thymectomy when i was 13, i tried almost evrything out there, only plasma pheresis evry 4 weeks helps. it has been my life line since i was 16.yo im 25 now....

[TheVoiceof1crying]

Hey, are you from kentucky?

[wontinghope]

hi was just wonting to know what changed doctors minds from you are lazy to you have MG.from things i have read i think my 19 year old daughter has MG but our doctor said no.dont know what to do but everthing she has points to MG.she walked,ran,etc until 13,now she even has problems chewing she will be 20 this year,

[6satans6slut6]

theres plasma pheresis, tymetomy, mestion, prednazone, but none of these have helped me, i need a cure!! please help!

[farihahazani]

hi my name is fariha.i want to know how to cure this diseases without medicine?

[Nordhausen25]

Hi my name is Elena, i got MG when i was 28 now i am 34, my life has been miserable since i got it. could someone please help me find a cure or better my self. i have got to diferent neurologist but they all want to cut me open "no way" . I will like to know about other treatments. please help.

[diahboo98]

the best thing i ever did, to me it gave me a chance on life.

[90876589]

i got mg and im 18 i was born with the damn thing

[dshadow101]

Hi, how long have you had MG, and How long did it take you to recover from your thymectomy?

[slucru]

Did you get a response from Jenny? We forwarded your comment to her, and I will be happy to contact her if you did not receive a reply.