Hi ya'll.
So I've been having my autoimmune symptoms for only a short while. Started back in August with a B12 deficiency, then I started getting a better picture of my condition with all the other symptoms popping up in October like dry eyes, dry sinus, dry mouth, and shortness of breath(the first I had).
I ignored the shortness of breath issue for some time and just wrote it off as "dryness just occurring in other parts of my body." I came on here for some searching it seems this is an issue that needs to be taken care of pronto.
I don't have coughing, wheezing, or excessive mucus, but ever since the beginning of this month I've getting some nerve/muscle sensations across my body. Some of this may simply to due to what I suspect is a magnesium deficiency(hopefully), but I've getting these weird chest pains which I can't tell apart. It doesn't seem to be my lungs,might just be my chest muscles/nerves but could be my ribs for all I know. I think it mostly occurs when my breathing is not affected.
My shortness of breath doesn't really manifest itself with exercise or movement like many others. It just pops up randomly for minutes and then dissipates, running/sitting down/standing up/walking/whatever. Sometimes it'll be for a few days in a row, and then just go away for a bit, then pop back up. When it does it feels like theres some constriction going on with my passageways, not really acute pains in chest/lungs, but sense of blockage or tightness impairing my air flow behind the nasal and down the passageway, if that makes sense.
I got a chest X-ray on the 22nd of November and it showed no abnormalities at all. My gastro recommended I get some pulmonary function tests to get a better idea, she suspects asthma.
I'll probably be getting the PFT soon..but how conclusive will it be? Or I should say, how sensitive of a test is it? If I'm clear, will that clear me of some of the "dangerous" conditions like interstitial lung disease, or pulmonary fibrosis? Reading up on some of these conditions just scares the living heck out of me :(
Hi Paul,
I had my first PFT two years ago, and and turned up with small airway obstruction. I was tested because people with my Immune Deficiency (CVID) are prone to developing lung conditions.
The finding of COPD explained the asthma-like attack that I had, earlier in the Spring, when visiting my son whose house was being remodeled. All the sanding caused dust which irritated and inflamed my lungs.
This year I was tested again (I will be tested every year now), and the condition is worse.
Now I have to keep the humidity in my bedroom LOWER because high humidity (good for eyes and mouth) triggers asthma.
I have been having a deluge of unpleasant conditions this year, and the asthma isn't even on the list. BUT, I will ask for a referral to an asthma/airway specialist in the coming year.
Cough Induced Asthma: At the present I know from experience that coughing only makes it worse! I force myself not to cough and it subsides. I have some pressure, and itching in my chest and throat.
I know that the my doctors will identify my conditions and do their very best to alleviate my discomfort. I don't have an inhaler yet, but perhaps eventually I will use one for stopping an attack.
My husband has been refinishing our kitchen table, IN THE KITCHEN. When he starts sanding I go in the bedroom and shut the door.
It's always something,
Hugs, Elaine
People with Sjogrens and other autoimmune issues need to see a pulmonary doctor and have peak flows done and often times a sat scan of lungs to get a baseline. A chest x-ray does give them some info but not enough. We are prone to have asthma because the autoimmune, allergies and immune deficiencies are all so closely related.
We can also have the other lung issues that you mentioned but we have to have our lung issues identified and verified. We often have inhalers, I have three at present plus the albuterol nebulizer, and need to be always aware of the air we are breathing in order to wear a mask if necessary. I have worn a mask for well over 30 years when I worked in the garden because I knew the ground was full of mold and other stuff that will settle in the lungs.
We also need to get educated on what is in our environment that can trigger attacks or make our reathing worse. I could never move into a brand new house as all the wood smells and chemicals involved in the building of a house just put me in bronchial constriction within about 5 min. Eucalyptus is terrible for me as are all the odors in the really neat craft shops. It is no fun being so darn sensitive to things.
The autoimmune attack on the lungs is sometimes decreased by some of the medications like Imuran or Cellcept. Some people are helped by Methotrexate, but at the same time this drug can cause pulmonary fibrosis. We just have to be educated and advocate for ourselves. The most important thing we can do is to see a pulmonary specialist. Good luck. Irish
I had a similar thing after a cold virus that lingered. I had the chest X-ray, a PFT and a CT scan with contrast. All was fine with the lungs etc. I ended up with a diagnosis of asthma (which I had NEVER had before in 62 years). I found Breo really cleared things up and I have not had to use an inhaler for awhile. I no longer need the Breo either.
My symptoms arise with heat and humidity and same as the other commentators...with allergic reactions to things. I exercise and can breathe just fine. Most times it appears when trying to fall asleep which is unnerving. I have gotten rid of all rugs in my house and changed all the filters on the AC/heating system. Knock on wood things are back to normal.
If you want to feel reassured just bring up your concern about Interstitial lung disease.
I agree with both Irish and Navigator. They are giving good advice that comes from experience and wisdom.
I have had two CT scans of my lungs, in fact just about every inch of my body has been scanned, MRI'd, etc. So the baseline is there for future reference.
By the way, the chest x-rays AND the CT scans did NOT show my small airway obstruction. This is because: "The small airways are beyond the resolution of CT
scanners and difficult to assess directly (134)"
When I just 'scan' this article (cited below) I am amazed at the complexity of the human body, and how I don't pay any attention to organs/system until they are trouble.
It's really always something.
Hugs, Elaine
Here's my source: https://www.google.com/search?client=safari&rls=en&q=small+airway+obstruction+diagnostic+tools&ie=UTF-8&oe=UTF-8
Thanks ya'll.
Forums can be a curse, you read up on alot of scary stuff, but its also good to have knowledgeable people who've been there give you helpful advice. Goes both ways I suppose.
I'm relatively young, 24, and getting my condition checked with my parents out of the country. Health care is accessible here but they feel like I'm going too far doing every test possible for my symptoms. We've done a lot and its taken a toll on their budget, so I don't blame them. I'll try to get a PFT done at least, and most likely do a CT/ECG back home when my insurance activates.
Peak flows are not that spendy and are a relatively easy test to do. The pulmonary doc is usually the one to do this as it does take some special equipment. This is the test that tells just how good we are exchanging air in the lungs. It is really an important test.
Also, when I was first going to all the doctors years ago I ended up having so many tests and many of them more than once. If I had it to do over again I would not do that. It was over kill and way to much money for me to pay out and to make my insurance company pay. The thing is we see all these doctors and they all want the same scans done over. It is sort of like that old saying about doing the same thing over and over and expecting different results or however it goes. There are some tests that need to be done over but I think I must have had one x-ray of my whole mouth full of teeth about 7 times.
With us it is not all the positive testing that helps with diagnosis but keeping a list of the symptoms and how we feel that gives more info to the doctor We have so many little picky things at times that drive us up a wall and if we and the docs kept better documentation it might help us put things together faster. I'm thinking back over the years and thinking about many of the thoughts I had at the time. Hopefully you won't have to have much more testing. Need to find that doc who puts the info together for diagnosis.Good luck. Also, googling helps to find info, but not all the stuff we read is true. In fact, a goodly amount isn't accurate or even true. Lots of outdated info also.Many discussion forums are full of really bad info and advice.
I think this forum is pretty well balanced and monitored. It doesn't get too crazy around here with info on diseases and treatments. Also, there are times when it pays to sort of back off on the testing and just hunker down. I know I would et so burned out from being on the road and going to the doctor and dentist so much. I would take time off and rest and sort of let my mind and body catch up and reassess how things were going. Just some stuff from my past experiences. Irish
Having small airways and then asthma is very common with Sjogrens. So having your baseline PFT tests is a very good idea. I'm on a maintenance inhaler now that i use everyday and it has helped tremendously.
Liz D.
please what is PFT? ? the test where they check your lungs and u have to breath and then exhale very hard?
This is the peak flow that is being talked about. I have mine done at the pulmonary docs office and they have this device that you hold in your mouth between your teeth and they put a clothes pin like device on your nose so no air goes through your nose.
You have to take a very deep breath and then blow out as hard as can be and keep on blowing until you think your brain is going to explode and you will fall on the floor. They will have you do the test without an inhaler and often they will also have you use an albuterol inhaler to see if this helps improve your lung function.
This test tells them the amount of air you take in and blow out and several other figures that explain how well your lungs are functioning. Irish
thanks Irish, i did that test
I believe 'PFT' refers to Pulmonary Function Tests. Peak Flow is normally abbreviated to PEF (Peak Expiratory Flow)
Just having a clear PFT does n ot necessarily clear you. i had 2 and only one showed "slight asthma". Two months later, I suddenly had worsened shortness of breath. Xrays showed nothing. Not until I had a CAT scan with contrast did they see that I have Interstitial lung Disease due to Sjogrens. Even after high doses of steroids, the symptoms , not the disease got better. I am now on Imuran,an immunosuppressant. In one and a half years, the disease has been stable, but I still need oxygen 24/7. I still get around and have a Life. So, if symptoms persisist , dont just depend on pulmonary function test.
Wishing you good luck and a Happy 2017 to everyone
Lesley
Glad you caught it and got it stabilized. Is it better to do CT with or without contrast?
I'm out of country right now and CT without coverage costs about $300. I think a bronchoscopy would actually be even cheaper. Would this be a better option if I can get a biopsy with it?
I found info awhile ago and posted in under "useful links' section:
26 Sjogren's Pulmonary Clinics https://sjogrensworld.org/index.php?topic=26653.0
Perhaps there is one in your area which you can ask your Dr about if you do not have a specialist/pulmonary.
I am adding the Sjogrens Foundation US support group as they have leader contact numbers.. so if someone is a matches in your area, with one of the clinics, a contact may be helpful to you. As with anything I would research the clinic first. https://www.sjogrens.org/home/get-connected/support-groups/us-support-groups
I need to have tests done sometime this year myself. But, as of now I am focused on some other matters and have not contacted any of the above.
Are you out of the country temporary?
Thank you quietdynamics, there happens to be one in my city(SF). Do you know if any of these clinics take Blueshield? They dont' happen to be free are they?
I will be out of the country until Feb.
I have not made any appts yet.
You can call about insurance. And research clinic on internet. (which is what I would do.)
According to recent speech I Affordable Care Act is still in effect, so you can apply for insurance?