I finally snapped and pressed my doctor to run some tests. You guys know I have been posting for ages on here about how I feel like a 91 year old man. My doctor sent me for a sleep study just to shut me up. I told the sleep doctor about all of my breathing issues so he sent me for a pulmonary function test. According to the test I have a severe restrictive lung dysfunction. My DLCO is very low, which means that gas is trapping in my lungs, and causing hypoxemia. I'm going in for a HRCT scan in a few weeks to see what's going on. My FEV1 and FVC are also severely reduced, but my total lung capacity is normal, which also indicates air trapping. They think it might be a problem with my chest muscles or diaphragm, but it can also be Pulmonary Fibrosis. I thought I was going crazy before I had this test performed. I have constant headaches and I am tired all of the time. It is possibly due to a serious lung problem. My chest hurts all of the time. Sometimes more than my DVT leg. I was in the ER and they acted like I was exaggerating this; because it has been so long since I had the blood clots in my lungs. I hope the ER doctors and my PCP choke on these numbers. You can't fake a pulmonary function test. I have been asking for this and an echocardiogram for three years. I just hope it isn't anything serious; but if it is, it should have been discovered sooner. I will keep you guys posted with the results from the HRCT scan.
I do have a question though, just in case any of you guys might have an answer for me. Is there a difference between a CT Pulmonary Angiogram that is used to detect blood clots and a High Resolution CT scan that they are sending me to get this time? Wouldn't the CT Pulmonary Angiogram have detected pulmonary fibrosis? The last CT did show a mild collapsed lung with no focal consolidation, but that's it. I don't see how my lungs could have deteriorated so much in the last two years. Either that or the other CT scan is not the one that is needed to detect lung disease. Any how, thank you guys for any advice you can offer. At least I am not a hypochondriac. I was starting to question myself for a while there.
I also have moderate sleep apnea where my oxygen levels are dropping into the low 80's for most of the night. I have 8 sleep apneas/hypopneas an hour on average, but 25 hypopneas during REM sleep. I only had 30 minutes of rem sleep recorded, so most of my choking myself awake happens during this period of sleep. I spend most of my sleep time in stage two sleep. This also explains why I am waking up with throbbing headaches, choking, and I can sleep for 10-12 hours at a time and still be sleepy. I guess I'll add a few more illnesses to the ever-growing list of ailments. I have read that APS and even Sjorgren's can cause Pulmonary Fibrosis. Dr. Hughes might have to put me into his patient of the month blog if I continue to rack up all of these problems. There is a study out now that is linking APS to lung disease. I don't see why doctors do not take this disease more seriously? Putting me on Plaquenil like I have been asking for the past three years would have definitely helped to reduce the inflammation in my lungs. I wish we could just get the medical community to pull their heads out of their back sides.
I'm still waiting to go in Plaquinil! I almost stopped all my meds because it's been too overwhelming for me! I too have headaches everyday of my life and sleep apnea which goes with anothe thick blood disease I have! Ploycythemia Cer! I've had asthma since age 36 and been told that I've probably had APS SLL MY LIFE!!! I'm glad u are finally getting the tests you need and they're taking u more seriously this time! What is Pulmanary fibrosis? I'm not sure sorry ! Good luck!
Pulmonary Fibrosis is when your lungs become scarred and start to become stiff. It makes them harder to expand when you breathe and causes you to lose lung volume. It can happen to people with autoimmune disorders.
Just out of curiosity have you had a VQ scan? Checks blood flow and perfusion (you do get a dose of radioactive stuff) and takes about 15mins (from my bad memory) to do. Taken a few months apart can also show new or resolving issues with lungs. Yours seem to be a combination of APS lung damage and sleep apnoea. Otherwise a CPAP machine could possibly help?
I'm a little vague about health systems in other parts of the world but from what I read on here maybe ours isn't too badly broken after all!
I have been asking for this and an echocardiogram for years now. It all falls on deaf ears. I didn't have any right sided heart strain when I had my PE's, so they did not perform an echo at that time. It's like pulling teeth trying to get doctors to listen to the patient. I will ask for one of these tests too from the new doctor and see what they can do for me. Ozz, I have the poor people insurance for indigent people here in the states. I am lucky to have gotten this far with the testing. In some states you can't even find a doctor who Is willing to take this cheap insurance. If I had cash money to pay for doctors, I would have gotten this stuff done years ago. This country is facing a crisis now that millions of people have signed up for healthcare who never had it before. They are overloading the system. In other times, people would just die because they couldn't afford health insurance in the USA. You guys do have some serious issues with the NHS, but America has some really messed up problems. They always say go to the ER if you are sick and do not have health insurance. The ER just gives you some antibiotics, a pat on the back, and then they send you on your way. It's not a good system. It's healthcare for profit. An evil system. I feel guilty for racking up over 100k in hospital bills in the past four years. People have unfriended me on Facebook because they found out I am on Medicaid (the state healthcare for poor people). They make me feel like I'm a loser gaming the system (getting free stuff) when I am critically ill. That is how things work in the good ole USA. Thanks for the support!
I have been diagnosed with Pulmonary Fibrosis and was told that it's not linked to APS, I would be very grateful if you could give me the link to the recent study linking it to fibrosis as I've been told it doesn't cause this. I understand that Sjogren's can, I have sero negative Sjogren's.
I was diagnosed following HRCT, I hope you can get some help soon.
Sue, did you ever have a Pulmonary Embolism? I'm just wondering why the CT scan they used to detect the PE's I had did not detect the Pulmonary Fibrosis. Did you fail a lung function test?
I've never had an embolism, most of my manifestations have been cerebral. I am asthmatic but don't think this is connected. Not sure why your first test didn't show fibrosis but I had several chest x-rays and they showed nothing.
Thanks for the link I will have a look. Let us know how you are.
So sorry to hear your ongoing diagnostic problems. There was a time in my life when i did not have any insurance. I was a poor college student with repeated cases of "strep throat;" swollen glands, fever, come and go rashes. Student Health would put me on antibiodics over and over again.
well . . turns out the Student Health docs were also ordering strep culture tests to make sure that i really did have recurring strep and not something else --like lupus? But the head clerk at Student Health always counter-manded these orders and i just got sicker and sicker and sicker . . .Why? Because i did not have med insurance, was scholarship student, and therefore, not worthy to grace the halls of this clerk's office . . until i finally ended up in the ER where my case was brought to the attention of " the big docs" at my university's medical school.
The whole story came out, the clerk was fired, and i was diagnosed with a severe drug allergy to all that penicillin I had been prescribed ober the previous year. Oh! and I discovered that the Student Health docs had actually been prescribing erythromycin, but that same clerk dispensed penicillin because " that freeloader never pays her bills and penicillin is cheaper."
I was so sick for so long. i graduated - just barely - and though i am greatful for my Ivy League quality education, i wonder how much better a student i would have been had i not gone through this. I kept getting recurring cases of " mono" which finally a doc back home said was lupus. He treated me with steroids and for the girst time in 15 years the " mono" symptoms resolved and i felt healthy again,
Good luck!
Gina in West Virginia
I have had other lung issues in the past when I was still smoking. I went for 2 months with a severe sore throat (had trouble eating and swallowing) and coughing up green stuff. I would cough so hard I would almost pass out. I finally drove myself to the ER in the middle of the night, and they took one quick look in my throat and sent me home. They said it was not strep and that it was viral, so they could not give me any antibiotics. I wonder what I had going on back then, as coughing up sputum and a sore throat for two months could also have been a pulmonary embolism. I have been tested for SLE Lupus, but all came back negative. I have never been tested for Sjorgren's. I will keep you guys posted.
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