Beginning of breathing problems
Posted 02 May 2009 - 07:35 AM
I'm brand new to the forums. I was encouraged after reading a few posts by how many responses people got.
After 1.5 years of weird vague symptoms, head fog, and worsening GERD, I was finally diagnosed with scleroderma about a month ago. I don't have hardly any skin involvement yet, so the doctor was hopeful that it was the limited form or CREST. But the last couple weeks I've noticed some breathing difficulties. It feels like I have to push a little harder to get air in. Sometimes I feel like I'm not getting enough air and have to take a few extra breaths. It used to kind of come and go, but now it feels like I have it all the time. I had a Pulmonary Function Test (PFT) a month ago and it was normal. But since then my symptoms have gotten worse. I've heard that sometimes the PFT can be normal but then the CAT scan is positive.
I fear I may have the beginnings of pulmonary fibrosis. I am scheduled for a CAT scan of my lungs but am scared out of my mind. Here I was thinking I had limited scleroderma and now I probably have the diffuse kind.
Does this sound familiar to anyone? Are PFT's not as good as the CAT scan? What are the beginning symptoms of lung problems like? How fast does it progress? I'd love to hear other people's experiences with this.
Posted 02 May 2009 - 08:06 AM
Welcome to the Forum. I'm sorry you have needed to find us. We always hate to have new members but love to have new friends! I hope we can provide you with good reliable information and understanding support. You can definitely count on getting a lot of hugs!
It's my understanding that a CAT scan (computed axial tomography) might 'see' tissue changes in the lung before a Pulmonary Function Test might pick up clinical signs, but I could be wrong. They are almost always used in conjunction when making initial assessments. If there is pulmonary involvement, then a schedule might look like PFTs every several months and a CAT scan maybe once a year, usually dependent on what the PFTs show. If there isn't pulmonary involvement at the time of diagnosis, a doctor still might want similar monitoring if he feels that the patient might be at greater risk for such involvement.
I have pulmonary fibrosis (ILD) and pulmonary hypertension and my first symptoms were a persistent, annoying dry cough and then shortness of breath upon exertion. We have a good page on the symptoms of pulmonary fibrosis and you'll also find tests and treatments there too. Don't let yourself become overwhelmed with information, though. In the beginning it is really difficult to determine what might be applicable to you and what won't be. I spent an awful lot of time scaring myself half to death.
As with most other things connected to scleroderma, progression is truly an individual thing, subject to many factors and difficult to predict. It sounds like you've got a lot of things going for you, especially a relatively quick diagnosis and a doctor who sounds like he's on the ball. That's so important.
I hope you'll post often. In the meantime here is your first ISN hug ((((HUG!)))) and my very best wishes.
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network
Posted 02 May 2009 - 08:14 AM
I think the CT Scan would be much better then the PFT test to pick up early problems. The CT scan could pick lung problems or abnormalities before they cause Lung Function Problems.
On the flip side PFT is not invasive whereas the CT Scan does expose you to xrays, and is considered more invasive.
I wouldn't worry too much, plus some cases of CREST are worse than diffuse, and vice versa it just depends on the person. You could also have Pulmonary Hypertension which is now easily controlled, I believe, but once again I am not a doctor:)
Right now I wouldn't worry about anything especially since your PFT is good, that means your lungs are still functioning well, which is really good!!! All in all good news right?
Hang in there and oh, welcome!!
Posted 02 May 2009 - 09:31 AM
I'm sorry to read about your recent diagnosis of scleroderma, but am glad that you have decided to join us. We all know what you are going through and are willing to provide whatever support we can in a virtual world. You have already been given some great information so I won't add to what has already been said.
I did however want to add that breathing problems can be caused by more than lungs. I'm not a doctor so I can only speak from personal experience, but when I was first diagnosed I was having a terrible time breathing, especially when I lay down. It was due to weak chest muscles and a weakened diaphragm. It turned out I also had polymyositis, another connective tissue disease that affects the muscles. Because I had a great doctor who jumped on things quickly, the breathing problem cleared up within a few months.
Other things that can cause breathing problems are heart problems and complications due to GERD or acid reflux. It's important to get everything checked out whether you think there is a problem or not. For instance, knowing that you have a normal PFT is a GREAT thing! The CT will provide more information. If it too is normal - then another GREAT result. If not, then you have caught the problem early so you can stop it in it's tracks. So please talk to your doctor about other tests for scleroderma. You can get your baselines and know early what complications you do and do not have.
It does sound like you have a good doctor so work closely with him or her and make sure your questions are answered. Also take in a written list of questions or concerns. Please keep us informed on how you are doing. We're here for you Darlin'.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 02 May 2009 - 12:06 PM
Not knowing is probably the worst part of this disease. Every time I see my rheumatologist he reminds that this beast is just unpredictable. So the best strategy is stay on top of any new symptom or change and take it as it comes. It is often hard to not let anxiety and fear of the unknown take you for a ride, but focus on the things you can control and can do to take good care of yourself. Be assertive with your doctors and don't walk away with unanswered questions/concerns. Insist on the best care you can get.
Good luck and let us know how all the tests come out.
Posted 02 May 2009 - 03:47 PM
Welcome to the Forums. I'm so glad you've joined us. I'm really sorry to hear you've been diagnosed with scleroderma. I do hope it ends up staying as CREST. I know how scary it can all be at the beginning. I was petrified, but as time when on, you'll learn to adjust to new symptoms, and not freak out as badly.
Please let us know how the test results turn out.
Posted 02 May 2009 - 05:22 PM
Posted 02 May 2009 - 05:23 PM
That is really good info. I hadn't heard about the muscle problems before, I will have to ask my doctor about that.
Thanks for responding
Posted 02 May 2009 - 05:43 PM
Thanks more than you know for your post. Getting some cyber-hugs was actually much nicer than you might think. The info you linked was helpful.
I will let you all know what happens with the CT scan. I don't have the cough at the moment so maybe that's a good thing.
Posted 04 May 2009 - 12:09 AM
Please note this warning found on our Treatments for Pulmonary Fibrosis page:
Symptoms - Lung and Airway Disorders. A warning about antihistamines and Lung Disorders. Antihistamines, which dry the respiratory tract, have little or no value in treating a cough, except when it is caused by an upper airway allergy. With coughs from other causes, such as bronchitis, the drying action of antihistamines can be harmful, thickening respiratory secretions and making them difficult to cough up. Merck.com.
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)