Looking to get info/input in regards to restrictive lung function
1. If I have restrictive lung function does that mean I have restrictive lung disease? or asthma which is obstructive function based on what I researched.
2. If I have restrictive lung function do you believe further testing should be done to determine what type of restrictive lung disease it could be?
3. What are the many tests out there used to diagnose restrictive lung diseases?
4. Which do you think are the best?
5. Is a Body chest cat scan WITHOUT CONTRAST reliable?
or is CONTRAST NEEDED for a more accurate reading?
6. What are the medications used to stop this from progressing?
7. AM I DOING/TAKING EVERYTHING I CAN TO STOP THIS FROM PROGRESSING? (ALBUTEROL, ANTI-INFLAMATORY BRONCHODIALORS,XOLAIR,SINGULAIR?
Being that I started out with Asthma symptoms years ago, I am still being treated for asthma(obstructive lung function) EVEN THOUGH all 6 of my pulmonary tests say "RESTRICTIVE LUNG FUNCTION" with decreased flow at low lung volumes,vital capacity low & total lung capacity reduced, residual volume is high indicating incomplete exhalation, no significant response to bronchodilators.
ALLERGY BLOOD TEST - Allergic to everything (cats,mold,ragweed,etc)
PULMONARY FUNCTION TEST(6)-all six say Restrictive Lung Function
Performed by 2 different doctor
CT SCAN(NO/CONTRAST) - NO Acute infiltrate/normal
MYOCARDIAL NUCLEAR PERFUSION SCAN(Heart)& Stress Test - Normal
BLOOD TEST "99" - EOSINOPHILS 765 HIGH OUT OF RANGE (Allergic Hive reaction 1999
Restrictive lung function does not necessarily mean that you have restrictive lung disease. The lung tissue can be normal with the restrictive lung function being caused by conditions outside of the lungs. Examples would include: air or fluid in the pleural space that surrounds the lung, respiratory muscle weakness, or deformity of the chest wall. The lung function test just tells you that the lung volume is small; it doesn't tell you why.
If you have restrictive lung function further testing should definitely be done to determine what type of problem it could be. The tests that are used to diagnose restrictive lung disease are: x-rays, CT scans, and more sophisticated pulmonary function tests (PFTs). These tests are often used in a complementary fashion. A chest CT scan without contrast is reliable. Contrast is not need, but high resolution is useful.
Flow rate is normally reduced at low lung volumes. That does not mean that you have obstructive lung disease. Residual volume is either low or normal with pure restrictive lung disease. It will appear "high" when expressed as a fraction of total lung capacity. If it is high in absolute terms or in the preceding ratio exceptionally high, that is evidence of air trapping, most commonly seen with obstructive lung disease, such as asthma or COPD.
Your doctors should be able to specify the cause of your restriction. Remember, also, that "normal values" are averages or mean values and that normal lung function occurs in a bell-shaped curve distribution. Ask your doctors if your values could be at the low end of the normal range. Also, note, that for a given height, asians and blacks have smaller lungs than caucasians.
Hi, Im about as confused as you are. I first started getting chest pains in November 2005. Also I was feeling very under the weather and was short of breath with exertion. I hae also been of work since then because its been to bad. I have had 4 x-rays, CT Scan and last month a high resolution CT-scan which im told is the best scan there is at finding lung deasese.
I was told that the scans were completely clear however my lungs are small. I have also had lung function test and it showed my lung compacity only being 60%. also the report i read (which is a automated computer report based on results) siad Pulminary fibrosis. However my doctor still says this is asthma! and it doesent feel like ashtma as i dont get attacks and my chest feels heavy/tight every day. Like I siad im in the exact same situation. Im taking steroid inhalers just in case it is fibrosis. but they dont make me feel any better. I find the only thing that helps is steroid tablets (prenisolone).
So to some it up the High res CT is showing my lungs as completly clear and my lung function as very adnormal. Very confused. But i think next best step is a lung biopsy and that may be the same with your case to rule out any major problems.
Hope you get to the bottom of it soon friend. Also please let me know how you get on. my email address is simon.***@**** if you want to contact me direct as we both seem to be in the same boat.
"""""also the report i read (which is a automated computer report based on results) said Pulminary fibrosis. However my doctor still says this is asthma! and it doesent feel like ashtma as i dont get attacks and my chest feels heavy/tight every day. Like I said I am in the exact same situation. Im taking steroid inhalers just in case it is fibrosis.""""""
IS THIS HOW CYSTIC FIBROSIS IS TREATED WITH JUST STEROID INHALERS?
"""""but they dont make me feel any better. I find the only thing that helps is steroid tablets (prenisolone""""
HOW DOES THE PREDNISONE HELP YOU? WHAT SYMPTOMS DOES IT RELIEVE?
I AM AFRAID TO TRY IT. BUT IF ITS THE ONLY WAY
""""So to some it up, the High res CT is showing my lungs as completly clear and my lung function as very adnormal""""
I CANT UNDERSTAND HOW I CAN BE SUFFERING SO MUCH (& YOURSELF) & YET IT DOESN'T SHOW UP ON A CAT SCAN.
""""Very confused. But i think next best step is a lung biopsy and that may be the same with your case to rule out any major problems""""
LUNG BIOPSY? THAT SOUNDS SCARY & RISKY. I HOPE I DONT HAVE TO HAVE THAT. HOPE THERES ANOTHER WAY.
I AM CONFUSED TO AS TO WHY THIS IS HAPPENING TO ME.
BECAUSE I NEVER SMOKED (OR LIVED W/ONE)
HERIDITARY WISE-NO ONE IN MY FAMILY HAS ANY LUNG CONDITIONS
EXCEPT MY GRANDFATHER/EMPHASEMIA (BUT HE SMOKED FOR MANY YEARS)
ALL I CAN COME UP WITH IS PERHAPS LUNGS WERE DAMAGED FROM IRRITANTS (CATS/MOLD)
WHAT IS YOUR BELIEF/THEORY AS TO WHY THIS HAS HAPPENED TO YOU?
DO YOU SMOKE?
DO YOU HAVE ALLERGYS (allergies) DOES LUNG ISSUES RUN IN YOUR FAMILY?
CAUSED BY MEDICATION?
CAUSED BY WORLD TRADE CENTER EXPLOSION?
AUTO IMMUNE DISEASE?
"""Hope you get to the bottom of it soon friend. Also please let me know how you get on. my email address is simon.***@**** if you want to contact me direct as we both seem to be in the same boat."""
I LIKE TO REMAIN ANONYMOUS "EMAIL WISE" BUT WILL GLADLY CONVERSE WITH YOU THROUGH THIS FORUM OR ANOTHER BOARD I DONT KNOW IF I AM ALLOWED TO NAME THE BOARD BUT IT STARTS WITH HEALTH.
THANK YOU SO MUCH FOR YOUR KIND RESPONSE.
The only thing that helps me is prednisolone. The way it helps is that after about 2-3 days after taking them the constant heavyness tightness completly disappeers and the chest pain is 90% better. however after they were off my symptoms start returning and I feel awful again. I would highly recommend trying steroids. i have never had any problems with them and the docs do say dont take over long term (ie months/years. but a weeks worth is not gonna do you much harm (my opinon).
To be honest, I just cant get pulmonary fibrosis out of my head. even though they say HR-CT rule this out. Its just my symptoms are so close to what this is. I am scared real bad and the only thing keeping me positive is the normal ct scan. I am going to ask for a broncoscopy which is when they put a camara down your windpipe into your lungs and look for problems and take a sample of cells. This in my opinion would rule in or rule out certain problems. However i have to try to convince the doctor to do this. Im 23 and did smoke about 3 cigs a day for about 3 years which is not alot compared to people who smoke like 2 packs a day but it still worrys me. My family have no history of lung problems what so ever. exept for asthma.
Another theory is that is could be some sort of fungus infection. however i thought this showed on x-ray (maybe wrong) I have never had a cough though.
Its ok if you dont wish to email me direct. but if you can keep me upto date with your situation through this forum that would be helpful.
""The only thing that helps me is prednisolone. The way it helps is that after about 2-3 days after taking them the constant heavyness tightness completly disappeers and the chest pain is 90% better. however after they were off my symptoms start returning and I feel awful again. i have never had any problems with them and the docs do say dont take over long term (ie months/years. but a weeks worth is not gonna do you much harm (my opinon)"""
THANKS FOR YOUR INPUT ON PREDNISOLONE.
I AM SCARED BECAUSE OF THE STORIES I'VE HEARD
BUT IF ITS THE ONLY WAY.
ITS BEEN 3 YEARS OF THIS NOT GETTING ANYWHERE WITH CURRENT PULMONARY DOCTOR OR MY ONE TIME VISIT WITH MY 2ND OPINION PULMONARY DOCTOR.
MY NEXT STEP IS TO SEE ANOTHER PULMONARY SPECIALIST.
PERHAPS TRY PREDNISOLONE.
ALSO FIND OUT WHAT IS CAUSING THE RESTRICTION LUNG FUNCTION RESULTS? IF IT IS DUE TO:
1. INTERSTITIAL PULMONARY LUNG DISEASE/FIBROSIS
(IF SO WHICH OF THE 100 DIFFERENT TYPES OF INTERSTITIAL LUNG DISEASE IT MIGHT BE?)
2. EXTRAPULMONARY (OUTSIDE THE LUNGS) RESTRICTIVE LUNG DISEASE
B. THORASIC CAGE (CHEST WALL DIFORMITIES,ETC)
DID SEE A RHEUMATOID DOCTOR A MNTH AGO
I BELIEVE THEY WANTED ME TO HAVE AN EXRAY OF MY THORASIC AREA? WHEN I WENT LAST.LOST MY INSURANCE @ THE TIME SO DIDN'T GET THE XRAY @ THE TIME. TOLD THEM ABOUT MY LUNG SYMPTOMS AND CONSTANT CHEST ACHINESS.
C. PLEURAL (SCOLIOSIS/PLERISY) DID HAVE SCOLISIS AS A KID
""To be honest, I just cant get pulmonary fibrosis out of my head. even though they say HR-CT rule this out.""
I WAS SPEAKING W/SOMEONE ON PREV BOARD & THEY HAVE FIBROSIS.
THEY SAID THEY CAN TEST FOR IT WITH A SWEAT TEST,BLOOD TEST TO CONFIRM GENE MUTATIION,CT,& BRONCHOSCOPY LIKE YOU SAID.
"""I am going to ask for a broncoscopy which is when they put a camara down your windpipe into your lungs and look for problems and take a sample of cells. This in my opinion would rule in or rule out certain problems. However i have to try to convince the doctor to do this. Im 23 and did smoke about 3 cigs a day for about 3 years which is not alot compared to people who smoke like 2 packs a day
My family have no history of lung problems what so ever. exept for asthma."""
GOOD LUCK TO YOU. YOU ARE BRAVE TO GO THROUGH THIS. I WOULD LIKE TO KNOW HOW THAT GOES.
I HAD AN ENDOSCOPY (TUBE DOWN THE THROAT TO LOOK AT STOMACH/ESOPHOGUS)FOR DIGESTIVE SYMPTOMS. FOUND OUT I HAD A HERNIA & LATER DEFECTIVE GALL BLADDER(NOT PROPERLY CONTRACTING THE BILE INTO THE INTESTINES)
"""Another theory is that is could be some sort of fungus infection. however i thought this showed on x-ray (maybe wrong) I have never had a cough though.""
COUGHING IS NOT MY ISSUE EITHER. I GATHER YOU'VE BEEN EXPOSED TO SOME MOLD/FUNGUS. WHICH PERHAPS IS WHY YOU QUESTION LUNG FUNGUS INFECTION. I WAS CHECKED FOR THIS AND WAS TOLD THE CT/NO CONTRAST WAS NORMAL & NO INFILTRATES WERE FOUND.
""Its ok if you dont wish to email me direct. but if you can keep me upto date with your situation through this forum that would be helpful."""
SURE THAT WILL BE FINE. WORKING PRESENTLY SO CANT GUARANTEE REGULAR WKLY VISITS. BUT PROBABLY SPORATICALLY WHEN I AM AVAILABLE.
DO YOU POST ON OTHER SITES AS WELL?
NICE SPEAKING W/YOU.
FEEL FREE TO POST TO ME AS WELL WHENEVER YOU WOULD LIKE ON YOUR OWN SCHEDULE.
NO PRESSURE. I AM INTERESTED IN YOUR STORY AS WELL.
Many thanks for your input. I hope that us working together on this forum we can both get through this.
The lasted update is is that I have now been given another course of steroids (thank god) because it was starting to get realy bad again. Also went to see physio this week aswell and she has given me lots of different breathing techniques to try. To be honest I cant see this being helpful but I am willing to give anything a try at this stage. Also I have been referd to another chest specialist so hopefuly i will get that broncoscopy done at last.
I didnt realise you have had your problem for all that time. Its been bad for me having it for 9 months. Do you find that when you are at rest or laying down that you find that you are also thirsty for more air. I dont mean (pantting) short of breath. but just feel you cant get enough air? also do you get quite exerted even after a fairly short walk? Also do you often feel fatigued?
Sorry just one more question, With your acheing chest do you find that you somtimes get in in your back? also can the pain also be 'stinging/hot'.?
I also forgot to mention that my chest is slightly 'deformed' due to a operation a had when I was a baby. This had made one side of my chest flatter than the other side. The doctors say this could be causeing the problem. However I thought I stopped growing at 18? and I was fine then. Also I cant see that making me look pale and be lathargic aswell. I JUST CANT SEE IT.
I havent ever worked around fungus but you never know I could of caught somthing. but now thinking about it, it would be unlikely.
Currently im not posting on any other forums but I may do in the future.
Many thanks again for your input, and please keep me up to date with your situation. If I find any other information that may be helpful to our situations I will let you know strait away
Yall..i am 17 years old ...i have been to national jewish ( the #1 respiratory hosptial in the usa), and ive been to dozens of other pulmonologist...all of which are clueless on my situation. I was browsing the internet when i stumble on Simone's comments and it literally sounds excactly what im going through! I have always had a feeling that there is an elephant sitting on my chest and have always had that constant chest pressure/tightness and chest pain. I also have reuccurent respiratory infections including sinusitis. My lung functions have a clear as day restrictive pattern but... like simone and the others...all my ct scans and high resolution ct scans and basically everything has been clear! my lung functions fluctuate anywhere between 50 % and 60% and are extremely steroid ( prednisone/ solumedrol) sensative. The doctors have always told me though that my lungs were just small and that 60% was the best that i would hit.... but being persistant w/ telling them that i still didnt feel good we tried and experimental steroid pulse. I received 1000mg of solumedrol for 3 days in a row..totalling up to 3000mg and belive it or not i reached 101% on my lung functions! and i also felt amazing ! like that chest tightness/pressure/pain all went away and i had tons and tons of energy! any ways the only downside is that i am 17 years old and am already feelin the steroid sideeffects w/ cataracts and osteopenia so we are rethinking maybe using a steroid sparing agent such as imuran or cyclosporine. the doctors have always said asthma, and like simone i always tell them that it isnt! then they said that its clearly interstitial lung disease but then said no because nothing appeard on the ct-scans. just recently they did a blood test that showed that i had extremely elevated sjogren's ab ssa ( also known as anti-ro) even on prednisone (which is suppose to regulate that cell ) and my anti nuclear antibodys were negative which is rare because anti-ro comes from antinuclear antibodies ....who knows...maybe that might give ur doctors a clue and it would be interesting if u do come out w/ high levels...any ways the last 4 years of my life have been super miserable and i have lived in and out the hosptials trying to figure out whats wrong. its frustrating as you all might noe but its kinda a relief to see that its not just me going through this..and that there are other cases like mine....please keep in touch and if yall have any information or if anyone comes up w/ a possible diagnosis please keep me informed! my personal email is ***@****
The lasted update is is that I have now been given another course of steroids (thank god) because it was starting to get realy bad again.
I JUST CAME BACK FROM A NEW DOCTOR WHO GAVE ME MY VERY FIRST PRESCRIPTION FOR ORAL STERIODS. I HAVE NEVER TRIED ORAL STEROIDS BEFORE.
*I AM VERY SCARED TO TAKE IT*.
I HOPE THAT IT WONT SCREW UP MY BODY EVEN MORE (SIDE EFFECTS).
I WISH THEIR WAS ANOTHER WAY TO TREAT THIS WITHOUT RESULTING TO ORAL STEROIDS.
I BELIEVE YOU SAID YOU HAD BEEN ON A SHORT COURSE OF PREDNISONE & WENT OFF IT. DID YOU FEEL WORSE WHEN YOU WENT OFF IT (MEANING WORSE THAN BEFORE YOU STARTED IT)
HOW LONG WERE YOUR COURSES OF STEROIDS?
Also went to see physio this week as well and she has given me lots of different breathing techniques to try. To be honest I cant see this being helpful but I am willing to give anything a try at this stage.
IT CANT HURT TO TRY.
WHAT KIND OF BREATHING EXERCISES IS YOUR PHYSICAL THERAPIST GIVING YOU.
IS THIS THROUGH A PULMONARY DOCTORS OFFICE? OR
A SEPERATE GENERAL PHYSICAL THERAPIST?
Also I have been referd to another chest specialist so hopefuly i will get that broncoscopy done at last.
GOOD LUCK WITH YOUR BRONCOSCOPY.
WOULD LIKE TO HEAR ABOUT HOW IT GOES OR YOUR RESULTS.
MY DOCTOR SAID HE WOULD NOT GIVE ME A BRONCHOSCOPY
BECAUSE MY XRAY & PREVIOUS CT WAS NORMAL.
I didnt realise you have had your problem for all that time.
Its been bad for me having it for 9 months. Do you find that when you are at rest or laying down that you find that you are also thirsty for more air. I dont mean (pantting) short of breath.
also do you get quite exerted even after a fairly short walk?
YES MOST DEFINITALY
Also do you often feel fatigued?
PROBABLY BECAUSE I HAVEN'T HAD A GOOD NIGHTS REST SINCE JUNE OF O5 WHEN THIS ALL STARTED FOR ME.
With your acheing chest do you find that you somtimes get in in your back?
MY CONSTANT CHEST TIGHTNESS/ACHINESS/HEAVINESS IS IN THE WHOLE CHEST AREA (UPPER/LOWER/MIDDLE) INCLUDING THE RIB CAGE (BELOW BRA STRAP AREA. THAT IS WHERE IT IS MOST SIGNIFICANT. NOT THE BACK PERSAY.
ALTHOUGH WHEN I AM HAVING A GALL BLADDER FLARE UP
I WILL GET ACHINESS IN THE BACK(MIDDLE OF BACK/RIGHT SHOULDER BLADE)ALONG WITH ACHINESS IN FRONT ABDOMINAL AREA (BELOW RIB CAGE RIGHT SIDE)
also can the pain also be 'stinging/hot'.?
NO.I HAVE NOT FELT ANY STINGING OR HOT SENSATION.
-DOES THAT MEAN YOU HAVE SJOGREN'S SYNDROME (COMBINATION DRY EYES/MOUTH AUTO IMMUNE DISEASE)?
WAS THIS CONSIDERED A ROUTINE BLOOD TEST?
OR A SPECIAL BLOOD TEST?
WHAT PROMPTED YOUR DOCTOR TO GIVE YOU THIS BLOOD TEST?
DID YOU MENTION A SYMPTOM THAT RAISED YOUR DOCTOR'S SUSPICION ABOUT SOMETHING THAT WOULD TRIGGER HIM/HER TO WANT TO GIVE YOU THIS TEST?
Yes, but we arn't sure whethor or not its Primary Sjogren's or Secondary Sjogren's to another autoimmune disease such as Rheumatoid arthritis.
No, this wasn't considered a routine blood test. I have a few relatives on both sides of my family with autoimmune disease such as rheumatoid arthritis, lupus , and certain autoimmune diseases ( or collagen vascular diseases) are directly corrolated with restrictive lung diseases and interstitial lung diseases, soo they decided to run a comprehensive rheumatoid/ autoimmune panel which included alot of tests- including that sjogren's ssa test ( anti-ro). Also people with sjogren's or these autoimmune diseases have increased infections, tiredness, and chest tightness so this is what i think also led my doctors to run these tests.
-CAN YOU GIVE A LITTLE HISTORY/SUMMARY ON YOUR EXPERIENCES,SYMPTOMS, TESTS DONE, ETC ON YOUR LUNG ISSUES?
WHAT ARE SYMPTOMS?
DID THEY COME ON SUDDENTLY OR OCCASIONAL & BECOME CHRONIC?
WHAT TESTS HAVE YOU HAD?
WHAT HAVE YOU RULED OUT?
I've had asthma scince 2 years of age, so i've been seeing an allergist scince then. I've always had breathing problems but never anything bad. I was actually running 5k races competatively,playing tennis, soccer, football, and swimmung. I always had a restrictive pattern also but it all really started around the age of 13. I began getting reuccurent infections and viruses. I had RSV like 8 times, Flu 5 times, Mycoplasma 3 times, Epstein bar Virus 2 times, and just chronic bronchitis and sinusitis constantly. During this time my chest symptoms started feeling alot worst and i developed my continuous chest tightness, chest pressure, chest pain, and just difficulty breathing. I've had 5 bronchoscopy's which just revealed some mucus stuff and a little bit of increases vascularity, but overall nothing obious. We even did one of the bronchoscopy's awake to check for floppy airways but that was negative also. I've had lanygoscopys which shows that i don't have Vocal cord dysfunction. I tested positive on my methecholine challenge on the first dose! so im definatly asthmatic. We tested for lung weakness but my lungs were actually stronger that normal. My lung functions consistantly shows restrictive lungs and all my ct's and x-rays are clear. We've done a bunch of other tests but they all come back negative - which is good but frustrating. I have extremely high IGE and i also have low IGG subclass 3 levels. The only ones lately that have come back positive, are the Rheumatoid Factor test and the Sjogren's ab ss-a ( anti-ro) which is even more interesting because i was on high levels of prednisone when we ran the test, and prednisone should normalized these levels. Also sjogren's and rheumatoid diseases are directly corrolated with restrictive/interstitial lung diseases and reuccuring infections, so this has the possibility of explaining everything!!!
so we just started treating me for this so we'll see how it turns out! I hope i've been at least some help to you and please feel free to contact me at ***@**** if you have any more questions. Please keep me posted on whats going on and ill do the same!
I have been in hospital again for the last two weeks due to the same problem. However they still could not shine any more light on te problem. wile I was in I asked them if they would perform a broncoscopy but they siad this would not show much because of clear CT,S. They did perform another lung function test which again is still showing as restricted (about 62%). They gave me another couse of prednisolone but this dosent seem to be having much affect now with the symptoms and I just feel as though im getting worse. Your proberbly asking why am I out of hospital then? well they was not preparded to do any more for me in hospital but i have a follow up appointment in about 4 weeks. plus i would rather be at home with my family. Im realy sorry I cannot add anything more constructed to the thread but I thought I would keep you updated. If I can find any information that can help you both I will let you know and please also keep me up to date with your situation aswell.
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