[brandonc]

Hey everyone

I'm new to this site, by some miracle I came upon it while writing a paper for one of my classes. I am sooooooo relieved to come across people that I can talk to and have an idea of what I am going through. I am now 20 and I was diagnosed last year with MG and I'm on everything right now prednizone, mestinon, cellcept, you name it. After being bounced from doctor to doctor and misdiagnosis to misdiagnosis for a year I finally had an ear, nose, and throat doctor take a random blood test because of something he read in a medical journal earlier that week and it happened to be MG. If he hadn't read that magazine I don't know if I would have a proper diagnosis still (I was diagnosed will asthma, allergies, and just plain nerves from leaving for college). Now after taking pills I can get through the day-to-day things alright but is not the same at all. I just remember 2 years ago I was at the top of my game and I was looking at college scholarships for football and wrestling, now if I don't take my medicine at the right time I cant even get out of bed in the morning without a complete struggle. I cant imagine taking all of these pills for the rest of my life, with all of the side effects that im feeling all of the time and the thymectomy is looking like a great option for me right now and I want to know what people with MG think about the surgery.


Brandon


P.S. Sorry if all of this sounds a little bit whiney, I felt like this would be the place to talk to people about it

[Rrae]

I certainly don't envy you for having to write a paper , but sure am glad you found this forum !!
You'll get plenty of support here, my friend !!

I admire you for being up at this hour doing a paper!!
Will be glad to get to know you!

A Friend Always
Rae

[redtail]

Hi Brandon and welcome,

no way do you sound whiney, its a great place to come get help, and know we all know what you are going through, we all need to vent now and then.

I have had a thymectomy, and glad I did, as I often think what if I hadn't would I be worse off??? But it is something you have to think about and get lots of information and come to your own conclusion. Feel free to ask lots of questions, there are a few people here who will be able to help out.

I know what you mean about the pills. I was diagnosed in 2002, and still sometimes I think this, but I know they keep my head above water.

Glad you found us, and don't hesitate to ask any questions, we are a happy helpful bunch here.
take care
Kate

[collinsc]

Hope you get better, sending you my very best wishes! I am also new here, but everyone I have talked to seems very nice. Keep posting, we would all like to hear from you.

collinsc

[suev]

Welcome Brandon!!

Glad you found us! There are a number of young people on the forum (alas, I would not be one of them) who are experiencing the same things you are.

As far as surgery goes -

Have you had a CT scan yet?
What did your neurologist say about the results?

Look forward to hearing more from you
Sue

[Shari_W]

Welcome Brandon

I am so glad that you were able to get a diagnosis. Life with MG can be what you said... A struggle. But it is something that we all learn to live with when we are able to accept our limitations and learn how MG affects us individually.

I haven't had a thymectomy so I cannot answer your question regarding that but I have lived with MG for 16 years now. It can be like riding on a roller coaster. I have had both highs and lows with this disease.We MGers all experience this. You have found a GREAT site with GREAT people who understand, care and will always be here to help you when you are down.

There is another young man on here that is about your age who will totally be able to relate to you. Hopefully he will respond to your thread so you can meet him. I feel it will be a tremendous help to both you and he.

Again, welcome aboard!

Blessings,
Shari

[brandonc]

Originally Posted by suev

Welcome Brandon!!

Glad you found us! There are a number of young people on the forum (alas, I would not be one of them) who are experiencing the same things you are.

As far as surgery goes -

Have you had a CT scan yet?
What did your neurologist say about the results?

Look forward to hearing more from you
Sue

Ive had a CT and like everyother tes it was inconclusive....frustrating. I think I'm due for another one here in a couple months for comparison. They said that it could have been enlarged, but I'm a big kid so it could just be that way with me.

[Juanitad]

Hi Brandon - welcome to the best place to learn about mg!

When I was diagnosed 10 years ago, I had never heard of mg (much like most of the people here!) I'm lucky because I found this site fairly quickly and was able to get a lot of my questions answered.

I wanted to inject a quick comment about the CT scan of your thymus. They can't always tell what is going on with the thymus with a CT scan - I was diagnosed in 2000 and had my thymectomy in 2005 because I was going to have to some surgery in the general area of the thymus and since they were going to cut me anyway, I wanted the thymus out. My CT scan hadn't shown any enlargement or tumors, but when they removed the thymus, I had a State II tumor for which I had to have radiation.

Also, my understanding is the younger you have thymectomy, the better results you may obtain. (Again, everyone's different and there are no absolutes with mg!)

Good luck with your decision - in my experience, the more information you have, the better decision you can make.

[rezmommy]

Welcome Brandon!
You have an excellent site for support and information. I have had the thymectomy and am glad that I did. I did not have a thymoma but because I was younger (?) 37 and recently diagnosed that is why my dr suggested it.
Take care ~ Melanie

[brandonc]

Im really serously thinking about it because Im 20, maybe when Im home for the summer the doctors at Northwestern will do it.