[art chick]

I'm the seronegative, 2 crisis in May and June, 15 days in the hospital, all tests negative and normal until now. . . my MRI with contrast of my chest just came back and it shows a mass of tissue in the thymus that they cannot discern yet. I have a CT w/o contrast scheduled for next week now.

My MG expert neuro is so awesome to have ordered this test. The previous place used a CTA(angiogram) to say I had no thymoma and dismiss any abnormality of the thymus. I would be at square one right now if he he hadn't insisted that that test was insufficient to visualize the thymus properly. Make sure you are having the correct test people. . .

It looks like I may have my "objective marker" for MG afterall and FINALLY. I will not have to get the muscle biopsy now.

If you were following earlier notes, the breathing tests did show a mild abnormal lung function pre-mestinon and a return to normal function after mestinon by a 20% margin.

The doc says I need surgery and it looks like soon. I have IVIG scheduled again in another week and a reassess of strength to reduce pred in preparation. He prefers transsternal to get all the adjacent fat and not to have to repeat surgery down the line if they missed something. . .

What a crazy turnaround!! debra

[Marin826]

Originally Posted by art chick

I'm the seronegative, 2 crisis in May and June, 15 days in the hospital, all tests negative and normal until now. . . my MRI with contrast of my chest just came back and it shows a mass of tissue in the thymus that they cannot discern yet. I have a CT w/o contrast scheduled for next week now.

My MG expert neuro is so awesome to have ordered this test. The previous place used a CTA(angiogram) to say I had no thymoma and dismiss any abnormality of the thymus. I would be at square one right now if he he hadn't insisted that that test was insufficient to visualize the thymus properly. Make sure you are having the correct test people. . .

It looks like I may have my "objective marker" for MG afterall and FINALLY. I will not have to get the muscle biopsy now.

If you were following earlier notes, the breathing tests did show a mild abnormal lung function pre-mestinon and a return to normal function after mestinon by a 20% margin.

The doc says I need surgery and it looks like soon. I have IVIG scheduled again in another week and a reassess of strength to reduce pred in preparation. He prefers transsternal to get all the adjacent fat and not to have to repeat surgery down the line if they missed something. . .

What a crazy turnaround!! debra

es,Debra,please make sure they treat your MG properly prior to surgery to avoid crisis,like my daughter had ( they did surgery the next day they Dx her with MG- we spent 40 days(!) in ICU then,now I now ,if they didn't rush and treat her MG at least for 2 weeks or so,it wouldn't happen....but if only would we know...at that time we did not know anything about MG,but DRs did!!...).
Best of luck.Marina

[djvallejo]

Hi Debra,

My husband had a thymoma & hyperplasia. He had a transternal thymectomy (for the same reason your dr recommended) last yr. I totally agree w/ Marina. Make sure they are treating you prior to the surgery to reduce your risk of crisis. My husband was on Mestinon & had several plasma exchange treatments in the 2 days prior to surgery as well as after. It is very important to make sure you are strong enough for surgery & recovery.

We will be happy to answer any questions you have about the process. Good luck!

Alison

[art chick]

Thank you for your advice!! I am so sorry to hear that you went through a crisis like that Marina, as if MG isn't enough hell.

Alison, my doc is planning on plasma exchange prior to surgery too : )

I went to my neuro and got the CT on Thursday and already got the results yesterday, although they were much the same. They still don't totally know but they are leaning toward hyperplasia. My neuro is thrilled because it's a real finding and since it's either hyperplasia or thymoma, it's also a definitive diagnosis after all the negative and normal tests.

Since my second round of IVIG two weeks ago (I am due to start 5 days again on Monday), my strength has improved so dramatically that he feels that we do not need to rush to surgery any more especially since I am on high dose prednisone and it is best taking it down more slowly. So we are starting the taper (going from 50 to 40 starting monday and down every 2-3 wks and then slow at end) and he is looking at Oct. for surgery to make sure I'll be strong which is the most impt consideration for surgery he said. He said his patients are usually only in the hospital 3 days and if there were any signs I wasn't strong enough for surgery, he wouldn't even consider it.

He said the mestinon is covering my true symptoms so I need to go off it so we can see where I am in the disease state to assess my true strength as I decrease the pred. The pred. and the IVIG are what are treating the disease. . .this was news to me.

I am doing pretty good since the IVIG and the pred are covering me I guess and I am just starting to go off mestinon. . . .fingers crossed.

debra