NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Hello (https://www.neurotalk.org/myasthenia-gravis/142930-hello.html)

Welcome Codie! You will find a lot of support and information here. It's great that you are part of a study. What a wonderful thing to do to help yourself and others.

:)

Welcome Codie!

Before I found this neurotalk site I had not talked or met with anyone else who has MG either. i have found it extreamly helpful to have this as a resource. regardless of where you are in your treatment it is nice to know you're not alone and that the people in this group face a lot of similar challenges.

it helps to hear/read everyone elses experiences, i think. i feel like i've grown a lot over the short time i've been cooresponding with everyone. it also brings me hope.

welcome again. i am so happy to hear you are doing well and participating in that research regarding the thymus. go get'em tiger!

Quote:

Originally Posted by koilover512 (Post 733996)

Hi, My name is Codie I am a 23 yr old female from Austin TX. I just wanted to say hi to everyone. I was diagnosed with MG alittle over two years ago. I refuse to get my thymus removed and I am in a study in San Anotonio TX. The study is to find out if the removal of the thymus is really needed in cases where there is not a tumor on the thymus. I have generalized MG. When I was diagnosed with MG I had already had every symptom in the book to the point where the bottom part of my lungs were no longer expanding. I had to have IVIG treatment and be on prednisone for a year. Two years of treatment and I am as normal as normal could get when it comes to MG. The only medication I take is half a pill of 60mg mestinon when i need it. I am very happy to of found a forum to where I can talk to other people with MG. I have never met another person with MG. EVER! I hope I can learn from other people and help anyone who needs it.

Quote:

I just want to add a caution here about tumors on the thymus. My CT scan and MRi didn't show a tumor either, but when I had to have some swollen lymph nodes biopsied and they were going into my chest, I had them remove the thymus also (being as they were there anyway). This was 5 years after diagnosis. Turns out I had a Stage II malignant tumor in my thymus. Fortunately, they got clean margins, but I had 28 radiation treatments, just in case.

So a tumor doesn't always show up on traditional testing.

I know. That's the scary thing, and I've met a woman, who had her thymus removed in 1976, when it was the mandatory thing to do, even though there was nothing on film that said tumor.

Well, after they operated, there was the tumor in plain view.

Anyway, she told me if she did not remove the thymus, as the policy it is these days, her doctors told her she would have had only lived for one year. Now, she volunteers at the MG clinic, and she urged me to get my thymus removed, which is another battle and the reason why I am going to the MG clinic.

I have read some articles about people who have had a tumor on their thymus and it didn’t show up on the MRI or CT. That is a huge concern with me as well. I really do not want to give up my thymus and I have been doing so well with treatment with it. At the end of the study I will have the option to have my thymus removed. I think I will keep it though. If I end up getting worse I think I will consider that option.

Hi, Codie
My name is Andrea, I also have Mg and yes i am depressed about it. I just found this site today so, i hope that maybe I will began to accept it and not feel like im the onlt one. I was diagnoised when I was 16 and I am now 23 yrs old also.I get stiffness in my fingers, just from typing, double vision, trouble getting out of bed in the morning , I get tired when waling short distances but I try to push myself.The worst is when i fet a cold or fever, omg I fee; so terrible bc I get shortness of breath and anxiety.Hopefully we can become friends and help each other through this now that we know we are not alone.The only one I have to talk to is my doctor but its not the same bc he only knows medically how i feel but he could never support me all but so much bc hes not going through it.Also I had my thymus gland removed and I dont think it helped.

Hi Andrea -glad you found the forum!! Lots of folks here with tons of great info and support.

How long has it been since you had your surgery?