Re: Pulmo appt / New Diagnosis

[Guest guest]

,

I don't know of any requirement from Social Security for three months of treatment before you can apply for disability to "see if you get better". Did someone at SS tell you that? Who is the "medical examiner"? Is that a doctor SS had you see?

I'm encouraged to hear that you may actually have NSIP as it is typically more treatable than some others like UIP etc. There are actually three subtypes within NSIP, fibrotic, cellular and mixed and all have differing levels of inflammation and scarring or fibrosis. The differential dx with the different types of NSIP is typically done with the biopsy. I'm curious about where in Arizona your slides are being sent? Have you considered asking that they be sent someplace like Duke or University of Chicago or National Jewish in Denver? These ILD centers have pathologists with tremendous experience in the different kinds of ILD. Just a thought.

I'm glad you're happy with the care you are receiving at University of SC. Just remember you really really need to have a doctor who specializes in ILD's not just a general pulmonologist. I know we sound like broken records but it's critically important. Your doctor may indeed be an ild specialist but it's a question you want to ask.

It takes time to process all this. Hopefully you are well on your way to getting all the information you need to be able to make informed decisions about your care.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tue, January 5, 2010 7:17:33 PMSubject: Pulmo appt / New Diagnosis

Had first pulmo appt since preliminary diagnosis from hospital stay in Nov 09.I am a patient at University of South Carolina, a teaching hospital and have been satisfied so far with care and interest in my health. I originally was diagnosed with ILD with fibrosis. Today doctor re diagnosed me with NSIP still with some uncertainty because CT not showing much fibrosis but more inflammation. Contrary to biopsy which is showing fibrosis and inflammation. The samples from the biopsy are being sent out for a 2nd opinion to AZ. Dr also upped my Imuran to 100 mg and lowered prednisone to 40 mg, also added NAC 1800 mg per day. Disability determination has also been put on hold. Medical Examiner says that SS guidelines has to wait 3 months of rx regimen to see if i get better?? I tried to explain that fibrosis is irreversable. Dr said he would comment on todays report on probability and explanation of my current condition.. SS is frustrating

me.Any and all feedback is appreciated. TejedaILD 11/09NSIP 01/10 ???36 / SC