MG with Thymoma
 

Hello everyone,

Where to start...Hmm...I'm 26...I started having odd symptoms when I was 21...I started noticing that my hands felt sorta weak whenever I was tired and I would get really bad joint pain first in my hands/wrists, then in every other joint in my body....I ended up seeing a rheumy who ran tests and saw that I have markers for Lupus and Hashimotos, but I was not diagnosed as I didn't fit the mold for either disorder...So I lived on with the pain/weakness for years...

Last year, everything got much worse...It started with a twitch in my lower eyelid, very mild facial weakness when tired...One morning, I woke up and I couldn't move my eyes from side-to-side for a few secs...It was really disturbing! Also, my eyes ached all the time...During all of these 'episodes,' I would see the doc., but he would emphasise that I was just being anxious...I also felt like I couldn't breathe sometimes...I actually DID have a chest xray done, which showed stenosis of the spine (don't forget, I'm 26, so this is really weird.), but that was it...So anyway...life went on...Then one day, I was talking to my friend on the phone, and my voice went all nasal...That was freaky and embarassing...It lasted the rest of the conversation...I hadn't talked to this person in years, so she must have thought I smoking helium balloons or something lol...Anyway, then my voice started to slur during stressful situations...That was enough...I finally saw a neuro who said that I have bulbar MG ( don't really have any double vision, ptosis)...Everything got worse...I had to quit my job, I couldn't eat at all...couldn't talk...I'm having plasma exchanges and IViG next week...Also found out that I have a thymoma, so I guess thymectomy soon too....

Anyway, sorry about the long schpeal...Just wanted to share my story...I'm very concerned with the thymoma aspect....It freaks me out that I have cancer...It makes me wonder what the rest of my life is going to be like...:(

Nicknerd, good luck with all of your upcoming treatments. A large percentange of thymomas are benign. I had my thymus gland removed Aug. 2008. It had a benign tumor on it, so no cancer for me.

Thanks for the encouragement, Tbarney! So yours hadn't 'spread'? I read that all thymomas have the potential to be cancer, or ARE cancer, but what makes them particularly dangerous or not is whether they have spread, or are 'invasive.'

One of the weirdest things is that I have had two xrays done in the past 6-months...One just a month ago, and it didn't show anything...I wonder why it would only show up on a ct scan...

Do you remember your throat hurting at all while you had the tumor? My throat has been killing me for months...I keep telling my doc. about it, and they don't seem to be very concerned, even though it really really hurts....

Thanks! :)

No, mine did not spread. I had a thymectomy one month after it was discovered. I had been having chest pains for about 9 months before that, which probably can be attributed to the thymoma. I kept thinking I was having gall bladder problems. I had sharp pains in my breast bone, right where the thymus is. I also got charlie horses (cramps) in my left ribs. I never had a sore throat though.

My thymoma did not show up on xrays or on the MRI, only on a CT scan. I don't consider myself to have cancer since it was benign and removed. I have also had about 3 or 4 cancerous moles removed from my skin.

http://i489.photobucket.com/albums/r.../Welcome-1.gif

Hi Nick, and welcome to NeuroTalk! This is such a great place to hang out with many interesting forums and topics, and with lots of nice and helpful people. :)

I am posting a link to the General Health Conditions forum as a starting place for you.

http://neurotalk.psychcentral.com/forum2.html

I wish you well, and we're glad you found us!

Hi Nick....welcome to NeuroTalk. I've posted the link to the MG Forum in case you haven't visited there yet. I hope things improve for you soon. :)

http://neurotalk.psychcentral.com/forum77.html

Thanks for the link, guys! I realized after the fact that I had posted this topic in the wrong forum...sorta...:S

I wish it could somehow get moved to the Myasthenia Gravis forum....*hint* lol

Hi

yes, it must be scary to be diagnosed with that. I pray all goes well for you.

There's lots of caring people here. Keep us posted. :hug:

((Nick)) It's nice to meet you.

What a journey you've had in your youth! I'm so sorry for all the problems that have plagued you.

I guess they didn't tell you whether the thymoma is noninvasive or invasive? I'm thinking (and praying) it's noninvasive! I just read up a little on that and actually, some of the symptoms you describe are symptoms that go along with a thymoma.

I'm so sorry the medical community kept putting you off! It's difficult when you're feeling bad to keep pushing at the doctors for answers.

It's great that you have found NeuroTalk. This is an absolutely wonderful community of caring and loving people. I hope you stay and keep sharing.

:hug:

Thanks so much for the warm welcome and well-wishes guys...I'm hoping that after the surgery, I will get back to normal-eventually...

Thanks!:hug: