Newly diagnosed with LAM after being misdiagnosed for 3 years

[lsparks]

Hey guys hope everyone is doing well today.  I am a new 37 year old LAM patient.  I was diagnosed 3 years ago with emphezema, COPD, and ashtma.  I recently seen a new Dr. that feels I was misdiagnosed and is sending me to Duke next week.  My question for you guys is I was very sick in March and almost hospitalized and every since I have been having chest pains off and on on the right side and in the the last couple weeks my right shoulder has been bothering me under the shoulder blade.  Is this common with LAM or is there something else going on?

Thanks for your input.....

Lisa
 
 

[SLester]

Welcome.  If I were you I'd go to the ER.  It could be a collapsed lung, or other things.  In my case I have pleural pain all the time, and sometimes I go to the ER and it's nothing, but sometimes it is problematic and I need medicine.  Once it was probably pulmonary embolisms, and I've never had a collapsed lung, but IMO it's better to be safe than sorry.

I wish you all the best and glad that you are finally diagnosed correctly.

[lsparks]

Thank you so much for your reply.  My breathing has not gotten any worse the last couple weeks just the pain.  I was trying to hold out until Tuesday when I went to Duke for more test.  I guess sometimes I feel like I am over reacting and should stop focusing on it.....  There is so much to learn with this new disease...

Thanks again.

Lisa
 

[harbauma]

I have gotten the pain in the shoulder blade area when I had a lung collapse.  I have also gotten it when a bleb popped but I didn't have a collapse because it occurred after my pleurodeses.

If you are also having coughing or increased shortness of breath along with the pain you should definitely have it checked out sooner rather than later. 

Mary H.

[sterling]

Hi Lisa,

Mary H. put it correctly. My wife has LAM and has this pain as well. It comes from the nature of the condition. However, as Mary wisely put it if you have increased shortiness of breath with constant pain you need to get to ER for an xray.

Grace, my wife had a collapse already. This passed with the usual chest tube procedure. Then some time passed and she had another one but very small in the upper portion of the right lung. Rather than going through the chest tube process she opted to leave it as these sometimes expand on their own. In this case it did over a period of 8 days I believe. The discomfort just slowly diminished and breathing returned to what it was. She just took it easy for the time period. She is on O2 7/24.

Hope this helps....  Mary...thank you for your contribution to the post.....  Sterling............

[stace]

I am also having the same problem as you,  with behind the shoulder pain.  The pain was a 9/10 and had an xray.  They didn't find anything.  I am still expriencing this pain but is only a 5/10.  I am going to see Dr McCormick to see what is going on.  Since I have been diagnosed I seem to be getting worse.  Always have an infection, which leads to antibiotics. 
I will let you know what his imput is on this matter.  I just dont want to go to the hospital again and look like a fool.  Having major pain and they cant find anything.
 

[bether]

I have the annoying back shoulder pain as well.  I asked my Dr about it and she told me maybe I'd have better luck contacting someone at Columbia.  I did and hopefully I'll get an answer soon.

Beth

[harbauma]

I have pain in the shoulder every once in awhile.  For me it is always on the left side.  One year at LAMposium, I talked with Dr. Steven Sahn who is on the Clinical Board of The LAM Foundation.  I asked if it could be a cyst 'popping' and he thought that was a reasonable explanation.  There likely was a small area that is not adhering and air was leaking in there.  At the most the discomfort only lasts about 3 days.  The rest of the lung is holding and so I don't get a pneumothorax.  It likely would not show up on an x-ray and for me doesn't warrant having a CT scan.  It was more of a problem several years ago. 

I had a mechanical pleurodesis in 1989 on the left side and a talc pleurodesis on the right side in 1995.  Both were very successful in my case.  The shoulder blade pain only occurs on the left side and doesn't occur much at all anymore.

[baker2009-10]

Hi there!

I was just diagnosed in October of this year. I had the same symptoms as your'e discribing and found out it was a collapsed lung. Mine was so severe that even short distance walking was bothersome and found that out while I was at work.

When i went in friday of that week because the chest pain and shoulder pain and shortness of breath wouldnt stop, I had a chest xray and by monday I was in the hospital and tuesday they put the first chest tube in and wednesday was the second one. I spent a total of a week in the hospital. They told me that my left lung was so collapsed that it was getting ready to push over into the right side of my chest wall and since it was so collapsed it was laying like a pancake 3 inches over my heart. They said had it pushed over to the right, it would have stopped my heart and would have been dead by the following morning.

After a day of procrastination about the chest tube, I agreed to have it put in and it saved my life. But I stil often have the pain and back pain that everyone talks about. I would seriously go to the ER and get looked at. They found my LAMS with an open lung biopsy when they found a small belb the size of a penny and one that had blown a hole the size of quarter through my lung wall which explained all the coughing but I also had a cold that went into bronchitis and pnemonia combo.

I am almost certian you have it as well but get it checked out. Btw, my bleb was found on a chest xray... Hope this helps.

baker2009

[bether]

Thanks for the concern but I go to my plumonoligist all the time and get chest x rays and pft's every other month.  I was there 1st week in Nov.  There was no collapased lung or any change in my lung function. It's just annoying pain (about a 3) under my left shoulder blade.  My Dr said it might be displaced pain (since your organs don't feel) sound good to me for right now...lol.  I'll bring it up again when I go to the NIH in the spring.  Unfortunataly sometimes i feel like everything is a symtom and I don't want to be that way. I don't want to dwell on this diease it's only one part of me and a very small part right now.

Beth