Help with diagnosis
Hi all,
Boy am I glad I found you all. I was diagnosed with restrictive lung disease about 1.5 ago. I went through a bad time when I was first diagnosed because I felt like they overdosed me on Prednisone but once that was under control I e been pretty much the same. They say my diaphragm is paralyzed and my lungs are 50% collapsed. If I take those steroid stepdown packs I can breath pretty good. So I go like this on Monday I take the first 6 2mg preds by noon I feel pretty good. I can walk just about as far as I want.to.go. I can't really do anything very strenuous or I get short of breath. If I'm careful and don't over do it I can do outside work, I can do a lot of things and I only use my oxygen at night. Now by Sunday night after not taking a pred for 3 days I can barely make it up my apartment steps. I need my oxygen almost all the time. I tried treligey and I did absolutely nothing. My family doc isn't quite sure what to have me try and my specialist hasn't prescribed me anything. Everything I know I've learned in my own. They don't know what has caused my disease so no one seems to know what to try. It's obvious to me to I have an inflammation problem if the steroids make it easier for me to breath. What is like to know is if there are any long term medications that I can try and see if they help at all.i know the pred is supposed to be a short term solution so I'd like to find something else to try. I've also heard there is a surgery that will help your diaphragm. Also, other than this I am still in good health, my heart is good And all major systems are still running well. If anyone has any suggestions I would love to hear from you. Once more, I'm glad you all are here. It's great to know others are.iut there listening.
Hi! Glad to see you found us here. I am like you, well I suffer from COPD and I am on 02 full time, with 30% lung capacity left. Just so you know we are not allowed to give out medical advice, not even those on here with a medical back ground. SORRY! Sounds like you have been a busy person with your walking and trying to figure out how to get feeling better. That's awesome that you are being so proactive. Was wondering if you took the information that you just told us to your Lung Specialist (Pulmonologist) if he/she would then work with you on some sort of treatment plan. There is so many different medications out there that could be tried I would think anyway. If you do not think your Pulmonologist would be willing to do so, what about seeking a new one?
Hi
, and welcome! As our good community member, , has said, although we cannot provide medical advice or diagnostics over the internet (for your own safety), your concerns certainly warrant further conversation.
It sounds that, although you were given a diagnosis of 'restrictive' lung disease, and have been told the diaphragm is paralyzed with a 50% 'lung collapse' - these appear to be generalized and rather vague impressions of your current medical condition. I am encouraged by your present daily capabilities - that is a positive sign. However, a real concern seems to be the lack of not only a definitive diagnosis, but also a plan for moving forward. Once a diagnosis is made, a genuine approach to treatment and medication would be next.
I would think you can accomplish all this (again, ashas suggested), by seeing a specialist (pulmonologist). This type of doctor focuses on diseases of the lung.
Keep in mind that what you've shared with us here is that you have been advised that you have a restrictive lung disease. That type of pulmonary disease is broadly different from obstructive disease (such as COPD and asthma). This is only part of the reason I would suggest you seek out a lung specialist.
What do you think?
Leon L (author/moderator)
