Hey Cherry,

Remember when you mentioned that they had seen a shadow on your CT scan? Was that from the interstitial lung disease or have they still not figured out what the shadow was from?

It's weird...I've never heard of smoking causing interstitial lung problems...From everthing I've come across, it always seems to be autoimmune in terms of the cause...My dad has it too, but it's caused by dermatomyositis...He has never smoked either...

Hi Nicky,

I just found out 2 days ago by reading my medical records what they found. It says a possibly mild enlarged thymus and mild interstitial lung disease on the base of one of my lungs.

I am really angry that I had to find out about my ILD that way since its damage is irreversible and that test was done over 2 years ago!

That diagnosis explains a lot of what I am going through, but the doctor never told me nor had me follow up with a pulmonary doc to treat it.

So I made an appointment today to see if I can get some testing done and find out what I should have known 2 years ago.

Thanks for the consideration.

Stephanie

OMG...I would be really angry too! These 'errors' are really costly to us patients, and I think that the people responsible should be sorta reprimended...That means that your thymus showed that it was abnormal before you were even diagnosed with MG, right? You said that you've had MG it since 2008? That's really irritating....And yeah, it's really important to know if your lungs aren't working well! They're kinda needed!

I met a woman who was having random periods of really high BP, anxiety, sweating, etc...Her BP would skyrocket from like 120 to 200 everyday for no reason...She kept telling her doc...Anyway, the doc. ran a test which showed that her adrenal glands were releasing too much hormone due to a tumour, and he never told her! That test was run like 5-years ago! She had been treated for Fibromyalgia for years and years...She only found out recently that she has this tumour because her pharmacy gave her a printed list of conditions that her doctor had diagnosed her with...

Sometimes what seems like 'interstitial' lung problems can be actually be caused be an infection...It's kinda a long story, but I met a woman who was diagnosed with MG because of breathing problems...They removed her thymus and found a tumour in it, only it wasn't a typical tumour...It was a calcified cyst caused by histoplasmosis...She had tiny cysts throughout her lungs too...They also found some in her spleen...I'm not saying that this is what's happening to you, but there's so much variation and it's so important for the docs. to check out everything thoroughly...

Sorry you're going through this, Cherry! I hope that you get some answers and to feeling better soon!

Hi Nicky,

Yes I am really ticked that I had to figure it out, but I went to see a doctor today and she told me the ILD was probably from me being a lifelong asthmatic. So that is one weight off of my shoulders

I went because I am having problems breathing but she ordered a CT scan so I should get it by this week.

Yes, the test was done in Sept. 2007 and I wasn't diagnosed with MG until June 2008. That test was before the 3 hospitalzations, the 2nd heart catherization, and a 1400 mile trip to the Mayo Clinic in Minnesota. She was so focused on the heart and lungs that she didn't think about the muscles.

Thanks for the consideration and for allowing me to vent, LOL.

Steph

Kendra, I'm sorry you found out that you have interstitial lung disease. I know it's not a good diagnosis but you can do some things about it.

Remember that nicotine is a cholinesterase inhibitor, just like Mestinon. So when you withdraw from it, you may need a boost in your Mestinon. That's the #1 reason you need to discuss all this RIGHT AWAY with your neuro. You don't need to go into a crisis too.

Quiting smoking is very hard. And there are lots of other chemicals in those cigarettes other than nicotine. Makes me sick to think about it.

Steph, this is for you:

http://www.ncbi.nlm.nih.gov/pubmed/10958234

Thanks for putting your photo up there. I am going to assume that you are African American. The reason I'm bringing that up is that lupus is very common for African Americans, more than Caucasians. And you said you never smoked. So, I am wondering if you may have lupus. Do you have any other symptoms that may indicated that? Yes, it may be from asthma but you don't want to assume that. Have you seen a pulmonologist? If not, it is probably a very good thing to do. Do you take any asthma drugs like Advair?

http://www.lupus.org/webmodules/weba...235&zoneid=523

And you better believe that doctors quickly cover their steps after they make a "mistake." Especially places like Mayo and Johns Hopkins. Steph, find yourself a good rheumatologist to make sure you don't have lupus. Pred, by the way, can make both MG and lupus "disappear."

Geez, you guys are making ME dizzy this week.

Kendra, I hope you can work all this out. Be careful though.

Annie

Sorry I haven't responded sooner but my computer was down today.

Nicky,
Thanks so much for the tips on quitting. I do agree I am a bit overwhelmed with all the changes right now. I am having a hard time seperating the effects of the Pred from the effects of trying to give up smoking. Hmmm that is interesting that you never got dizzy when you quit, maybe it is the Pred. I can say I have had more energy yesterday and today than I have had in months!!! I haven't had to lay down during the day and actually cooked and cleaned some yesterday. I was so opposed to taking the pred but it is so worth it if it makes me feel more like my old self. I agree with you on the patches. I tried them once before and they made me feel kind of weird! I am only smoking 3 or 4 cigarettes a day now. That seems to keep me sane but I can already tell a difference in my breathing and it doesn't feel like my heart is racing like it was. Hopefully one of these days we can kick this nasty habit for good!!!

Joan Marie,
I will definitely check out your post on the lung issue.
I thought I was the only person in the world who lived a healthy life style but smoked!!!! So glad I'm not alone.

Sue,
Congratulations for giving up smoking after 30 years! That gives me hope that it is doable!!!

I will make sure that all my Drs. are on the same page. Thanks for the info!
Kendra

Alice,
I so appeciate the info on how you have helped patients stop smoking. Have you found that tapering down is effective with most of them?

I think you are right that we have gone from nothing but a low dose of Mestinon to adding Pred, an antibiotic and then throwing in the smoking issue and it is so much to deal with at once. I am feeling better though and hope it continues.
Kendra

Stephanie,
I noticed that you said your Dr. thought your ILD is from asthma. The Pulmo told me there are several things that can cause ILD and asthma was one of them. She also mentioned exposure to chemicals like asbestos or mold, auto immune disease and of course smoking. I would be furious that they never gave you that information even though they felt you had bigger problems. The pulmo told me that there is scarring in the lungs that shows up white on the CT scan, almost looks like pieces of bone. She said if it is smoking related it should be significantly better in 2-3 months. If it is auto immune related it will not. I am hoping it is the smoking because I do NOT want to have a lung biopsy!!! I am fed up with tests.
Kendra

Annie,
Good point about cigarettes working like Mestinon. I hadn't thought of that.
Kendra