Hi everyone,
Wow it has been a whirlwind since Fri. morning. My Neuro called and said my CT scan came back abnormal. He said he doesn't read them so he sent it to my hematologist to look at. Then the Hematologist called and said the good news is that there is no thynoma!!! I wanted to jump for joy from that news but he did say the abnormality is some scarring he can see in one lung. He asked if I have had bronchitis or phnuemonia in the last year? I told him I had bronchitis in April. He said that made him feel better but he wants me to see a Pulmonologist so they can get to the bottom of what it is. I am wondering if this could be Interstitial Lung Disease? I know that causes scarring in the lungs and is common in people with Lupus or weakened immune systems? Have any of you ever heard of a connection between MG and scarring in the lungs or Interstitial Lung Disease? I am trying really hard not to worry yet but I am concerned there is something more serious going on than just scarring from bronchitis. I know most people with MG have multiple diseases and that worries me too.

On a happy note I seem to be tolerating the Mestinon this time around!!! This is day 3 of taking 45mg 3 x a day and no side effects. The only down side is that it doesn't seem to be helping too awful much. My weakness is a little better and my eye is open above the pupil but I am still battling the chronic fatigue and weakness in my arms. I am hoping if I can continue to tolerate it they will go ahead and let me up to 60mg 3 x a day.
Kendra

Hi Kendra,

sorry about your news, I don't know anything about interstitial lung disease, sorry!!
Its great you don't have a thymoma!!

Yay that you are tolerating mestinon!!! but not so good that its not helping too much!
thinking of you, and hoping all goes well
take care
Kate

Kendra, Don't jump the gun! What is in your lungs could just be inflammation. Wait until the experts tell you what is going on or you could drive yourself nuts. Sometimes it is hard to see a thymoma on a CT. I've known people who have had one with a negative scan. It's good the experts think it's fine though.

I am very glad you are tolerating the Mestinon. It's not a perfect drug though; you still have to take things easy.

Annie

Kate,
Thanks for the kind words. I am still hopeful that if I can continue to slowly increase my dose I will see alot more improvement. I definitely feel better than I did!!!!

Annie,
You are right, I am getting way ahead of myself. Thanks for pointing that out. I tend to be the type who wants answers now and hate waiting! I'm going to let it go for now.

I had no idea that a thynoma could be hard to see with a CT scan. I learn something new here everytime I visit the forum.

I am doing my best to take it easy when I start tiring out.
Thanks,
Kendra

Kendra,

I had broncitus and the ER Dr said I had cystic fibrosis, I shook my head in disbelief. Sometimes Dr.s just don't think before they speak, knowing I didn't have C.F. I knew it was just swelling from being ill or scar tissue. When I told my pulminologist what he said, he just laughed. I have scar tissue from when I had the chest tubes in and from lung infections.

Don't panic!

Hey Kendra,

I know it's not easy, but try not to worry. That is good news about the mestinon. Just keep taking it slow and I'm sure you'll do great on it! Take care.

Hugs,
Pat

Joan Marie,
I am sooo glad to hear you had scarring and it was nothing major!!! Thank you so much.

Pat,
I have decided to let it go. It still crosses my mind off and on throughout the day but I am going to try not to worry.
I am thrilled that my mestinon is working this time too!!!
Thanks,
Kendra

Hi sweetie! I was told by a dr that I might need a pacemaker while I was in the ICU over a year and a half ago, so I know how scary hearing stuff like can be! Turns out - nothing was truly wrong - doc was just an idiot! LOL!

I am so happy to hear about the Mestinon - now maybe you can get "bumped up" and really feel great!

I've missed you!
Love,
Erin

Glad the Mestinon is working. I agree with every one else - - - one doc's 'shadow' is another's phantom!! It could very well be NOTHING...and if it is 'something' ; don't worry about it until it has a name!!

I know easier to say than to do - - but I think about all the stress I put myself through with the MRI's and CT scans...and it all turned out OK (except for the MG of course).

Hang in there!
Sue

Hi Erin,
I am so glad to hear that I don't need to panic yet!!! It sounds like this happens alot.

I left a message for my Neuro this morning to let him know I am not having any real side effects from the Mestinon this time. I asked him if he would be ok with me adding a little more if I continue to go slowly. My fingers are crossed!!! I am supposed to be on 45 mg 3 x a day but am having a hard time getting the pills to cut without them crumbling to pieces. Yesterday I just decided to take 1 pill at a time and have still done fine. I am so ready to feel like my old self again!!!
Thanks,
Kendra