Off to U of M at 3 am to have a scope of my lungs done ::) If I hear, "we do not see anything" I will cry! I don't want them to find anything, but I am sure everyone knows what I mean. There has to be a reason why I cannot breathe good and end up on steroids constantly.
I will check in tomorrow and let you all know what the doctor says.
Designer
Best wishes to you, Designer. I hope they can give you a "reason" for your breathing problems and it's something that is easily fixable.
Good Luck,
Bucky
Oh Designer, I will be there on April 1 for something of the same problems. I wish they were scoping my lungs and will beg them to do so. haha.
I will be having more routine tests because of my diagnosis of pulmonary fibrosis. I wish you well and know you are in good care at U of M. I can't wait for your information. Lucy
Praying everything goes well and they find out why you are having problems.
Cricket~
Good luck. I hope they find something with an excellent prognosis that is easily treated.
Please tell us the results. I guess that you will not know for a day or two.
Hope you got some helpful news! I hope it was good too, but if not, at least helpful in knowing what is going on and what course of action you need to take.
Nancy
I have never had a scope before, that was different then I expected. lol I will have the complete results in one week. The fluid they put into my lungs and then took back out, was very cloudy. This can mean many different things.
BUT, I have to tell everyone this! The Pulmonologist, that I have Never met, said he thinks I have broncholitis also, DUE to the Sjogrens! I was just amazed that he linked my lung problems to Sjs! Where has this doctor been! LOL
Anyway, I got through it, and will definately let you all know when I receive the results:) Thank you for your support:)
Designer
It is so hard for us sjoggies to find docs who will admit that the lungs can be affected. I have a good pulmonary and she wants to check me more in depth i a few months for the same issues you have. I am not suffering big time from the SOB, but I have had the issues for many years and always called asthma. She wants to make sure that it is not progressing down that slippery slope. Good luck. IRish
Well DesignerS,
It has been a long week of waiting for you, I sure hope you got some news. I hope it was good too. Waiting is the worst. I have been thinking about you. Let us know. Take care. CK
Thinking about you and waiting with you for the results! Praying they are good!
Cricket~
Have you found out anything?
Designer--I am following this because I will be at U of MI on April 1 to see about similar pulmonary problems. It's pointing towards pulmonary fibrosis at this time. I am very SOB. I know they will give me a walk test and possibly some flights of stairs.l Yeah, right. :-)
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Quote from: eyeamdry on March 22, 2013, 04:36:02 PM
Designer--I am following this because I will be at U of MI on April 1 to see about similar pulmonary problems. It's pointing towards pulmonary fibrosis at this time. I am very SOB. I know they will give me a walk test and possibly some flights of stairs.l Yeah, right. :-)
I have had one phone call from U of M since my scope! I will be there on March 28th so they can put this puzzle together(hopefully)! The Pulmo wants more lung testing, not sure what else is left ::) I will keep you posted and I am so sorry you are struggling with shortness of breath:( A terrible feeling...
Designer
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Good luck to you on your appt. today . Hope all goes well. CK
A good and informative visit with the doctor at U of M yesterday, as a follow-up after my bronchoscope.
I do have bronchialitis, which is a lung disease of the small airways. The dr said it is caused from Sjogrens. As the fluid they flushed my lungs with was very cloudy, the dr also said, a symptom of Sjogrens.
Then he showed me my ct scan with all of the black areas(pockets) that air is trapped in.
He changed my diagnosis from asthma to Primary Sjogrens, and wants me to start on Plaquenil ASAP to try and slow things down. My joints are swelling so much and are very painful, which is either from Sjs or RA.
I wanted to share this with all of you for informative reasons and for hope to never give up searching for the "right" doctor.
The dr also told me that with Sjs, I can get more lung diseases, which does not make me happy. But the kindness and knowledge is a true blessing.
Designer
Thanks for the update!
No problem Joe:) I forgot to mention that I even earned $50.00 for donating some of my cells to research. LOL
Designer
Thank you Designer,
Ok..you got some answers and treatment protocol for the SS and a Dr. you trust....all great things.
How are you feeling now after the "flush" ...I am hoping it has relieve your symptoms.
Did he give you a Rx or inhaler to help in day to day activity?
What will be the next step with this Dr? or will he work with your primary monitoring you?
Have a great weekend.
I am glad you have an answer. I hope your meds help. Thanks for the update. CK
Glad you got answers, knowledge is power!
Hope you are feeling a little better
Cricket~
Quote from: quietdynamics on March 29, 2013, 08:51:56 PM
Thank you Designer,
Ok..you got some answers and treatment protocol for the SS and a Dr. you trust....all great things.
How are you feeling now after the "flush" ...I am hoping it has relieve your symptoms.
Did he give you a Rx or inhaler to help in day to day activity?
What will be the next step with this Dr? or will he work with your primary monitoring you?
This is the 3rd time I have written, I hope this one goes through!
I actually felt so good after the flush. For about 4 days, my breathing was better:)
I have been on inhalers, singulair, nasonex, albuterol, and xopenex for what was considered to be "asthma."
This dr. so strongly believed that I did not have asthma. That is why he has pushed to get all of this testing done. I am so grateful to have a Pulmonologist that is on my side.
The next step is to see the Rheumy at the U of M to be put on Plaquenil to try and slow the progression of my lung diseases and the arthritis. This dr does not want me to go to anyone else, because he wants to monitor my health issues and also make sure I do not take too many steroids, which have been given to me like candy for years. Hence, the many broken bones.
Designer
Have a great weekend.