No Thymoma
The good news is no thymoma. The bad news is no thymoma. I had it in my head that if a thymoma would be removed, this would be over. On a bright note, I seem to be swallowing a bit better today. Still so hard breathing, chest and throat tightness...But I tolerated more activity. I really would like this flare-up to end. Will it without treatment? I am getting steroids, but they are dropping down.
There is a little something on my chest ct that requires me to have F/U in 6 months. Always something.
There is a little something on my chest ct that requires me to have F/U in 6 months. Always something.
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But is your thymus normal? Was there any hyperplasia? I ask because the docs sometimes focus on thymoma or no thymoma. I got my report and found there was hyperplasia. When I continued to decline I brought up the hyperplasia to my neuro and ended up with a thymectomy.
I hope your follow up is stable.
Cathi
The good news is no thymoma, always! But I do know what you mean. You want and you need this flare up to end. You want remission one way or the other. We just keep plugging away, trying to find what will work for us. I\'m up for a couple of weeks and can feel myself coming down.
Is your doctor willing to try you on a IVIG or plasmapheresis?
Sending lots of positive, healing energy your way my friend.
Hugs,
Sherry
PS....sorry about the Brewers. I was looking forward to sharing the world series with you. You have the Packers!
I didn\'t have a thymoma either, Debbie. I was a little disappointed as well. Hoping they could take it out and hopefully a complete remission. Of course there are always hurdles we have to get over, but some day we will win the race for sure.
Love ya, Cathy
Cathi, I don\'t know about hyperplasia. Cathy, I am glad someone else felt that way. Sherry, now I can root on the Rangers with you!!
Well, Debbie? You\'re like me. I had no thymoma (or hyperplasia of the thymus). I cannot take Mestinon, so my MG is only treated with rest, prednisone - and a 20-minute walk a day (oddly enough). With meds & due diligence on my part? The intensity of my symptoms, generally stays at a dull roar. So my Neuro has kept me from stronger treatments. IVIG, Cellcept, Plex, Imuran - and all the others? They are all strangers to me (lucky guy). My Neuro tells me: \'\'Mr. Beale, you are quite plainly, the luckiest MG patient, I have ever seen.\'\' My Neuro\'s attitude is: Mr. Beale, here you go. These are some very simple & basic meds. And whatever you\'re doing? - KEEP doing it. Sure, some day? The stronger treatments will come. I can look down the road, and see that day slowly approaching. Anyway, and Okay! Too much prologue, I need to get to the point. Like you, my MG will also flare-up. This will last 2 weeks, and then slowly go back to a dull roar. But? If I overdo things, just one afternoon? I may have to sleep 16-hours a day, for a week. Like you were describing? My MG (along with the CFS) has its ups and downs. There\'s almost a regularity to it. Not a strict schedule. But - every 3-months or so? I get a bad spell. It always does subside, back to a dull roar, and I can function better again (when I\'m better rested). Debbie, you\'re on a path of good care. I hope your flare-up will go away soon. Rest up, follow your medical regime - and things will get better.
Can you get a copy of your radiology report? Mine says \"moderately enlarged thymus as seen in Myasthenia Gravis\" right on it (ask again why getting a diagnosis was such a challenge... ?). I went into the hospital where my CT and MRI were done and picked up a copy of the DVD as well... kinda cool to be able to prove I have a brain and the guts!
It does help to have a plan for the next step in feeling better, so this reaction is totally understandable Debbie! Rest up and come up with a new plan when you are ready.
I am concerned about your breathing issues, but am glad you are feeling more productive. Remember though: JUST BECAUSE WE CAN DOES NOT MEAN WE SHOULD!
Love ya, Becca