Question for those who experienced thymoma and stuff
 

Hi there, sorry to bother you once again with my endless questions.
Because breathing problems are my no 1 debilitating symptom, I wondered if the cause could be something else besides MG.
So, I was wondering if there are some of you who have had a thymoma or even a thymuscarcinoma? I've read this can cause some aspecific breathing problems like being out of breath. If you did: were you out of breath all the time, was it like, this constant factor with a little natural fluctuation due to exercise? Or was it like I have: sometimes I have almost none, and sometimes I can't do anything, literally.

The most important thing, is that my breathing probs fluctuate, a lot. Just like MG muscles weakness does. These breathing probs however are definitly top priority.

And a thymoma is this mass that won't change size every few hours (well, that's what I think anyway), so I don't think it is possible my breathing probs are in a way caused by something like that, but if you recognise it, hope you can tell me.

Any thoughts?
Thanks so much for any response!
(Yes, already have an appointment with a pulmo thanks to y'all, but I always am better off if I go informed and with some thoughts of where to look at!)
:hug:

Hi. I had a hyperplastic thymus with thymoma. The thymoma was benign. You're asking me to go back 16 years when the surgery was done, but breathing has never a problem for me. I have generalized MG, so muscle weakness and fatigue were my main issues. You're correct, the mass doesn't change by the hour, but things can go bad if the thymoma is neglected. To be honest, I never "felt" the mass and was totally clueless until the results came in. Let me know if there is anything else I can help you with.
Jim

I had my thymectomy in 2005 and they found a Stage 2 malignant tumor. I had 28 radiation treatments and because they had clean margins, I didn't have to do any chemo. I had no clue before the surgery that I had a thymoma. I was diagnosed with mg in 2000 and did okay with Cellcept and mestinon for the first 4-1/2 years. I then rapidly deteriorated for about 6 months and was admitted in May 2005 for my first mg crisis (breathing and overall weakness) They started me on IVIG and increased my Cellcept dosage, and I had a thymectomy as part of that treatment cycle to try and reduce the affect of mg on my body.

My breathing is (and was) affected by mg with any exertion. The breathing problems are coming from your diaphragm which is a muscle. My shortness of breathe with exertion was and is there all the time. My breathing is also affected by stress (actually my mg overall is worse with stress - I just happen to notice it more in my breathing).

Hope you get some answers with the pulmo doc. Good luck!

Thanks both, once again so helpful you all :hug:
Going to take all the info back to the pulmo, he wants to check the thymus too.

I dreaded even bringing this up, but have you been checked recently (via an echocardiogram) looking specifically for pulmonary hypertension?

I think you need a thorough evaluation by both pulmonology and cardiology.

Ask as many questions as you need to! OMG, how else do we know anything without asking? ;)

:hug:
Annie

True that, Annie :D

Never been checked on PH, but have had a thorough examination at the cardiologist a little while ago. At pulmo's I'm recently still undergoing some very lovely tests (yes, they are splendid!), and everything will be combined and looked at, and getting the feedback somewhere around april I hope.
I don't know if the pulmo is checking for PH, but I didn't get an ecg.
Going to read into that. Thanks for bringing it up (never dread, every little bit of help is very welcome).