Beth Dermatomyositis

[Guest guest]

Hey Beth... I've just realised you have put 'Dermatomyositis' in your Diagnosis line.....I must've missed that Post... last I remember you were 'suspected' of a CTD but not yet confirmed....

Has the official diagnosis changed anything for you by way of tretment options or change of course in any other way ( ie YOUR respoinse to now understanding more about whatis happening to your body or other stuff???????

GIO

In Breathe-Support , Beth wrote:>> Sher,> A rheumatologist treats many diseases and disorders. Arthritis and fibromyalgia are two of them and various other conditions of the joints, muscles and bones. They treat many auto-immune disorders, including lupus, polymyositis and dermatomysitis among them. At Duke the pulmonary clinic and rheumatology clinic are side by side and the doctors work very closely together. This is because so many of the diseases that a rheumatologist treats are implicated in causing long term lung damage such as various interstitial lung diseases like mine.> The answer to your other question is a pulmonologist can indeed diagnose these conditions but a rheumatologist specializes in them. I wouldn't go to just my pcp to be diagnosed and treated for my lung disease. (As a matter of fact my pcp in NY misdiagnosed my lung problems for over a year) I want a specialist for my connective tissue disease also. > Hope that helps clarify things a bit!> > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." > Dr. Seuss> > > > > ________________________________> To: Breathe-Support > Sent: Friday, December 12, 2008 7:11:03 PM> Subject: Re: Re: Tom Terrill / lung transplants> > > Bruce... so a Rheumatologist is the one to dx a connective tissue disease? Wonder why a pulmodude or dudette could not do that as well, or a pcp?> Reason I ask: I'm seeing a Rheumy re: my arthritis/fibromyal gia. Thought of you (and others) who go for different reasons. Hence the question. > MamaSher, age 70. IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Re: Tom Terrill / lung transplants> > > Sher> > The doctor at the University of Chicago felt I probably had an> underlying connective tissue disease such as Undifferentiated Connective> Tissue Disease or Polymyositis. Earlier doctors had not felt so. So, I> went to a rheumatologist. I have many indications of a connective tissue> disease but so far he doesn't feel it warrants him making such a> diagnosis. Neither does the second opinion rheumatologist he referred me> to. So, so far, no connective tissue disease diagnosed but who knows if> one will surface at some point.> > > > >> > > Hi,> > > I just had to pipe in about Tom Terrill as he is on our Board of> > > Directors and is a friend of mine. He's doing pheonomenally well> > > after transplant. He came out to our support group and gave the> > > members hope. And as the discussion is going, different hospitals> > > have different criteria for lung transplantations. Just because> you've> > > been turned down at one doesn't mean another hospital will accept> you.> > > A good website to check out is www.unos.org. The website has a lot> of> > > valuable information on lung transplantation. Another one of our> > > Board members had a transplant last year @ age 71 at the University> of> > > land. He is also doing very very well. Keep the faith. Don't> give> > > up.> > >> > > Leanne> > >> >>