hypersensative pneumonitits??

[missdiagnosed]

hi, i am a 32 yr old female..now, non smoker..i have had a chronic cough now since august of 2005, which was then dx as allergies and bronchospasm, (i also have allergy induced asthma) I followed up with my dr because cough was real bad in morning,severe wheezing, ribs hurt from coughing fits during night. was then dx with GERD.i went back after 2 weeks for another follow up, and my lungs were almost closed, i was gasping for air in the office..WITHOUT a chest xray, i was dx with double pneumonia and put on AVALOX. i took the meds for 10 days, and did NOTHING. i told my dr i was now concerned that ive been misdiagnosed altogether, because my asthma meds no longer worked..they put me on biaxin and told me i had abnormal breath sounds, but still didnt order cxray. after a severe "asthma attack" i went to the ER .. they said..bronchospams again ..and put me on pred. which actually worked..but now my wheezing was permanent, no matter what drugs they used ..well, now its january..went to ER again because i couldnt breathe..and they FINALLY  said ..lets do a cat scan of lungs, and CXR. well, xray was negative, but the scan was not..I HAVE BEEN MISDIAG ALL ALONG, wasnt asthma...wasnt allergies, all my dr's are freaking out because apparently, i may have a hypersens to an allergy im overexposing my self to.. findings...abnormal study..demonstrating patchy areas of groundglass density in the upper lobes bilaterally..few small hilar and mediastinal nodes visible, mild emphysema present..dense calcification of the main pulm art.L+R branches..
IM TERRIFIED, IS THIS REVERSABLE?? HELP

[CINDY4]

My daughter (she's 12 now, this started at 3) had the exact same experience as you. Seemed to be severe asthma, but it went on for 4 years with her before we found out what it was. Several recurrent episodes of "pneumonia". Treated with lots of steroids for the asthma. Which is ironically why it took so long to be diagnosed. Hypersensitive pneumonitis, can also be known as eosinophilic pneumonia. It can be a serious, life threatening disease without treatment, but now that it is diagnosed you will most likely be put on high dose steroids for a while, and very slowly weaned off (if possible)or onto a low maintanence dose. As my daughter's dr said when she was diagnosed, "it is the best bad lung disease you can have", because it is treatable, and many of these type diseases are uncurable, but this one can possibly go into permenant remission with early treatment. You got better when you went to the ER for the asthma because they started you on steroids, then as the steroids were tapered off it came back. This was the pattern we did for years with my daughter when we did not know what it was. She did steroids off and on for years, that is why it took so long to diagnose. As with you, the chest x-rays showed nothing, she had many of them over the years for pneumonia, but once a CT was finally done years later, it showed exactly what yours showed, the hazy, ground glass infiltrates, and enlarged lymph nodes. What these are is what inflammation looks like on CT. Many times with these diseases your eosinophil count in your blood will be high, because eosinophils are the blood cell that responds in allergic situations. These eosinophils fill your airways(they do in asthma too), but in this disease there is a whole lot more eosinophils in your airways than with asthma alone. Also these eosinophils cluster together and then spill out of the airway, and infiltrate into your lung tissue outside the airway. This lung tissue is called the interstitum. So your lung disease is considered an interstitial lung disease, because it is outside the airways too. Interstitial diseases are serious and that is why all your drs are freaking out. Many are uncurable, and not much can be done to stop the progression of disease. But with your disease being caused by the inflammation brought on by the eosinophils(the blood cell) you can treat it very effectively with steroids, and bring the eosinophils under control, and stop the damaging inflammation. You lungs can recover and return to near normal function, if all goes well with treatment. It is important that you see a good pulmonologist , because not many doctors know much about these diseases. Some know bascially nothing at all.  ALso one thing that is concerning that you mentioned is the numbness you are having. There is another disease that goes on past only having the lungs involved in this kind of eosinophilic reaction, but it is systemic(meaning it can affect any organ). It is called Churg-Strauss. In this disease the patients also develop nerve problems or what is called neuropathy, it is part of it. They can have numbness, pain, and strange sensations in the arms, legs, hands, or feet. It can be rapid to where they lose the ability to walk. Almost everyone with it presents with the lung disease first, many times with neuropathy (numbness etc.)But once diagnosed and started on high dose steroids and possibly chemo type drugs(if severe), then it can reverse, and the damage can many times heal. The criteria for having this disease is 1. asthma, 2. sinus problems, 3. pulmonary infiltrates(the ground glass stuff on CT), 4. neuropathy, 5. eosinophils in your complete blood count(cbc) over 10%, 6. vasculitis(inflammation in the blood vessels)--if you have 4 of the 6 criteria  it is considered diagnostic of the disease. CHurg-Strauss is a more serious disease than just the lung disease-obviously because it affects more things. But with early recognition it can be successfully treated. My daughter has now gone on past the lung disease, and we now know she has Churg-Strauss, she now has 4 organs involved. She also has neuropathy, and in the beginning when we did not know what all was wrong, she had alot of numbness, and tingling in her feet. You need to tell your drs about this numbness ASAP, and they need to run more blood work to see if this could be CHurg-Strauss. Do you know if any of your blood counts were high? If you do not know the results, you need to go to the hospital and get copies of everything they did (bloodwork, ct results,etc), and insist your drs do more tests. ALso since you recently took steroids they can mask your blood results, beucase they can control the blood a lot faster than the organs, so your blood count can be perfect but your lungs eat up with it. They may want to do a biopsy, they did with my daughter. Maybe you could suggest they first do a scope on your lungs and they can take a small biospy from the scope(which they say is not big enough to diagnose), but also when they scope they wash your lungs and take the fluid to look at and get a cell count from. This cell count from the fluid in your lungs can show very high amounts of inflammatory cells, which can also diagnose the disease without any big surgery. I know I have probably scared you to death by now, I hope not. I have just learned some valuable lessons along the way with this over the years, and wnated to try to help. You need to research this stuff on google. Look up all these diseases mentioned, on google and read the e medicine articles, they are all good, and really help you understand what some of this means. The words are all big and technical and I know how hard it is to understand, it took me a long time. The best way to think of this is, since these eosinophils are your white blood cells that fight infection parasites, etc. they are sent to your lungs to fight something, then they get there and start fighting, but there is nothing there so they fight your normal lung tissue by inflamming it. So this is considered autoimmune because it is your own immune system fighting you for an unknown reason. If I can help in any way please let me know, you can e-mail me at ***@****. Take care.

Cindy

[missdiagnosed]

finally had my appt with my pulmonologist today ... my lungs sound clear, no wheezing, no crackling....off the prednisone.just taking pulmicort and foradil twice a day. i brought my IGUANA to a shelter (that is possibly what was causing the hypersensativity) and have felt great ever since, not one asthma attack. all the doc said was "come back in march for a follow up PFT and take it from there"  i really hope the damage done is not permanent. i quit smoking now for 11 days.. YAHOO!! my blood work is still pending for iguana ..so, time will tell if she was the problem.

[National Jewish]

Hypersensitivity pneumonitis (HP) is inflammation of the air sacs of the lungs.  This is caused by an allergic reaction to inhaled biologic dusts that are small, 5 microns or less in diameter.  Biologic dusts include animal or plant proteins, microorganisms, and rarely low-weight chemicals.

Usually the chest x-ray is abnormal with HP.  In the early stages of the disease the chest x-ray may be normal, while the high resolution CT scan is not.

The symptoms of HP include cough, wheezing, and/or shortness of breath, especially with activity.  Once exposure stops, the symptoms usually clear within a day.  Continued exposure can eventually cause permanent scarring of your lungs.  So it is important to find what is causing the symptoms.  Then you will know what to stay away from.  Inhaled steroids are used to decrease the inflammation before it becomes scarring.  Sometimes oral steroids, like prednisone, are needed.

Allergic bronchopulmonary aspergillosis (ABPA) is inflammation in the lungs.  This is an allergic reaction caused by inhaling a fungus called Aspergillus.  People with asthma are most likely to have this problem.  When inhaled steroids are not helping, then oral steroids are used.

You should ask your doctors how they would proceed to find the cause of your pulmonary artery calcification.  This is most unusual in a person your age.  It could lead to pulmonary hypertension.  You should definitely request a consult with a pulmonary specialist.  Whatever follows, you do need to have a thorough evaluation of these conditions.

[J Johnson]

was your CT done with contrast?

[missdiagnosed]

yes, it was

[missdiagnosed]

i should add i smoked for 16 years, and ..also have numbness in left hand, which ive had now for 2 months, but told that was due to a pinched nerve, from coughing..