Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Babs, I see an ENT for my salivatory glands problem (Sjogren's). When I get stopped up and get the swelling, he dialates the ducts and drains them. I have one side that gives me fits on a daily basis. The ones under the tongue are unbearable! You can't describe that pain to anyone who hasn't had it. Isn't it awful when you go out to eat and the food comes and with it the pain because the food makes your mouth water.....and ours cannot at times. I have hurt so bad that others thought I was having a stroke or something. Everybody is used to me now. It is a miserable illness. Eyes, nose, no moisture anywhere. My teeth are getting really bad now. My long time dentist has breast cancer. I have had one extraction since then. Need to get back to taking care of teeth. I tolerated the Cellcept well. But, all of a sudden it stopped working. I will talk to the new pulmo doc tomorrow about the Rituxan. It is a scary drug, but this thing is rolling downhill like a snowball. Do I risk the Rituxan or do I get fitted for a box? No small decisions for any of us. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > > > >> > > > > Zena,> > > > > I know you won't see this for a bit because of the time> > > difference but> > > > I was wondering if you could share with me what kinds of > symptoms> > > you> > > > have/had from the dermatomyositis? How was it diagnosed? My > doctor> > > is> > > > planning a biopsy of the rash and blistering on my hands but I'm> > > having> > > > alot more fatigue recently and some muscle and joint pain. I was> > > > wondering if you had those kinds of symptoms?> > > > > Anything you'd care to share I would greatly appreciate. I > feel> > > like> > > > my body is revolting against me. LOL> > > > >> > > > > Beth in NC age 48 Fibrotic NSIP 06/06> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Babs, PS....your photos are great. You are a cutie. Your daughter is a cutie. Even your husband is a cutie. Thanks for posting them. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > > > >> > > > > Zena,> > > > > I know you won't see this for a bit because of the time> > > difference but> > > > I was wondering if you could share with me what kinds of > symptoms> > > you> > > > have/had from the dermatomyositis? How was it diagnosed? My > doctor> > > is> > > > planning a biopsy of the rash and blistering on my hands but I'm> > > having> > > > alot more fatigue recently and some muscle and joint pain. I was> > > > wondering if you had those kinds of symptoms?> > > > > Anything you'd care to share I would greatly appreciate. I > feel> > > like> > > > my body is revolting against me. LOL> > > > >> > > > > Beth in NC age 48 Fibrotic NSIP 06/06> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Joyce, I really admire you so much for your endurance. I know you have so many issues to deal with all the time. It sounds as if the Sjogren's is one of the toughest. I had a doctor a few years ago that told me that I had Sjogren's. I knew I had something and kept on and on till I got to pulmoary fibrosis. I don't know if I have Sjogren's but I was also told I had lupus, rheumatoid arthritis. Blood tests that I have had ruled out lupus & rheumatoid. I know I have eczema, some asthma, and maybe some COPD. Phew! Joyce, you are definitely the queen. I am still praying for you. Good luck tomorrow at the new pulmo dr. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > > > > > >> > > > > > Zena,> > > > > > I know you won't see this for a bit because of the time> > > > difference but> > > > > I was wondering if you could share with me what kinds of> > symptoms> > > > you> > > > > have/had from the dermatomyositis? How was it diagnosed? My> > doctor> > > > is> > > > > planning a biopsy of the rash and blistering on my hands but I'm> > > > having> > > > > alot more fatigue recently and some muscle and joint pain. I was> > > > > wondering if you had those kinds of symptoms?> > > > > > Anything you'd care to share I would greatly appreciate. I> > feel> > > > like> > > > > my body is revolting against me. LOL> > > > > >> > > > > > Beth in NC age 48 Fibrotic NSIP 06/06> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Hi Joyce, Jane Since last year, dr's have told me you may have Lupus or Drug Induced Lupus or Rheumatoid Arthritis. I have told them many times please make up your mind which one I have.... At one visit when they asked me, has anything new developed, I told them all of the above diseases....they told me who said you have this and that, I say you did! They tell me "No I didn't"....You don't have any of the above you mentionned. My D-Dimer, ANA & ESR are always elevated... Irene Raynaud's Disease 09/07 PF 03/07 Canada ---- Original Message ---- To: Breathe-Support Sent: Sun, 6 Jan 2008 3:37 pm Subject: Re: Joyce/lupus issues Joyce, I really admire you so much for your endurance. I know you have so many issues to deal with all the time. It sounds as if the Sjogren's is one of the toughest. I had a doctor a few years ago that told me that I had Sjogren's. I knew I had something and kept on and on till I got to pulmoary fibrosis. I don't know if I have Sjogren's but I was also told I had lupus, rheumatoid arthritis. Blood tests that I have had ruled out lupus & rheumatoid. I know I have eczema, some asthma, and maybe some COPD. Phew! Joyce, you are definitely the queen. I am still praying for you. Good luck tomorrow at the new pulmo dr. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > > > > > > > > > > > > Zena, > > > > > > I know you won't see this for a bit because of the time > > > > difference but > > > > > I was wondering if you could share with me what kinds of > > symptoms > > > > you > > > > > have/had from the dermatomyositis? How was it diagnosed? My > > doctor > > > > is > > > > > planning a biopsy of the rash and blistering on my hands but I'm > > > > having > > > > > alot more fatigue recently and some muscle and joint pain. I was > > > > > wondering if you had those kinds of symptoms? > > > > > > Anything you'd care to share I would greatly appreciate. I > > feel > > > > like > > > > > my body is revolting against me. LOL > > > > > > > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06 > > > > > > > > > > > > > > > > > > > > > Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Don't know about my ESR, but my ANA has been elevated for at least three or four years although they still say no autoimmune disease and my D-Dimer was quite elevated at the ER. And my lymph nodes are swollen. I think at some point our systems are just so screwed up, we get all sorts of indicators but who knows what they're indicating. At least so far the only thing diagnosed with me is IPF. > > > > > > > > > > > > > > Zena, > > > > > > > I know you won't see this for a bit because of the time > > > > > difference but > > > > > > I was wondering if you could share with me what kinds of > > > symptoms > > > > > you > > > > > > have/had from the dermatomyositis? How was it diagnosed? My > > > doctor > > > > > is > > > > > > planning a biopsy of the rash and blistering on my hands but I'm > > > > > having > > > > > > alot more fatigue recently and some muscle and joint pain. I was > > > > > > wondering if you had those kinds of symptoms? > > > > > > > Anything you'd care to share I would greatly appreciate. I > > > feel > > > > > like > > > > > > my body is revolting against me. LOL > > > > > > > > > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ______________________________________________________________________ __ > Meet the new AOL.ca. Free radio, music, videos, news & entertainment †" with a Canadian perspective. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 with me, the indication is inflammation that's going inside my body. The meds that I'm on can give a false/positive reading. ---- Original Message ---- To: Breathe-Support Sent: Sun, 6 Jan 2008 5:13 pm Subject: Re: Joyce/lupus issues Don't know about my ESR, but my ANA has been elevated for at least three or four years although they still say no autoimmune disease and my D-Dimer was quite elevated at the ER. And my lymph nodes are swollen. I think at some point our systems are just so screwed up, we get all sorts of indicators but who knows what they're indicating. At least so far the only thing diagnosed with me is IPF. > > > > > > > > > > > > > > Zena, > > > > > > > I know you won't see this for a bit because of the time > > > > > difference but > > > > > > I was wondering if you could share with me what kinds of > > > symptoms > > > > > you > > > > > > have/had from the dermatomyositis? How was it diagnosed? My > > > doctor > > > > > is > > > > > > planning a biopsy of the rash and blistering on my hands but I'm > > > > > having > > > > > > alot more fatigue recently and some muscle and joint pain. I was > > > > > > wondering if you had those kinds of symptoms? > > > > > > > Anything you'd care to share I would greatly appreciate. I > > > feel > > > > > like > > > > > > my body is revolting against me. LOL > > > > > > > > > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________________ __ > Meet the new AOL.ca. Free radio, music, videos, news & entertainment â€" with a Canadian perspective. > Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 It's even to a point sometime of the doctors arguing over which test means the most and which is best. One says D-Dimer, one says VQ scan, one says CT with contrast, which I can't have. Meanwhile they treat my pneumonia based on the simplest, the chest x-ray and somehow reached the concensus of no blood clots (the VQ showed no signs of any). Same way they follow the swollen lymph nodes but now feel the IPF has led to them and aren't concerned about lymphoma possibilities. > > > > > > > > > > > > > > > > Zena, > > > > > > > > I know you won't see this for a bit because of the time > > > > > > difference but > > > > > > > I was wondering if you could share with me what kinds of > > > > symptoms > > > > > > you > > > > > > > have/had from the dermatomyositis? How was it diagnosed? > My > > > > doctor > > > > > > is > > > > > > > planning a biopsy of the rash and blistering on my hands > but I'm > > > > > > having > > > > > > > alot more fatigue recently and some muscle and joint > pain. I was > > > > > > > wondering if you had those kinds of symptoms? > > > > > > > > Anything you'd care to share I would greatly > appreciate. I > > > > feel > > > > > > like > > > > > > > my body is revolting against me. LOL > > > > > > > > > > > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________________ > __ > > Meet the new AOL.ca. Free radio, music, videos, news & > entertainment †" with a Canadian perspective. > > > > > > > > ______________________________________________________________________ __ > Meet the new AOL.ca. Free radio, music, videos, news & entertainment †" with a Canadian perspective. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Bruce...why "can't" you have a C-scan? I'm allergic to the contrast dye but there is something I'm given in an iv before scan and the allergic reaction is avoided. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Re: Joyce/lupus issues It's even to a point sometime of the doctors arguing over which test means the most and which is best. One says D-Dimer, one says VQ scan, one says CT with contrast, which I can't have. Meanwhile they treat my pneumonia based on the simplest, the chest x-ray and somehow reached the concensus of no blood clots (the VQ showed no signs of any). Same way they follow the swollen lymph nodes but now feel the IPF has led to them and aren't concerned about lymphoma possibilities. > > > > > > > >> > > > > > > > Zena,> > > > > > > > I know you won't see this for a bit because of the time> > > > > > difference but> > > > > > > I was wondering if you could share with me what kinds of> > > > symptoms> > > > > > you> > > > > > > have/had from the dermatomyositis? How was it diagnosed? > My> > > > doctor> > > > > > is> > > > > > > planning a biopsy of the rash and blistering on my hands > but I'm> > > > > > having> > > > > > > alot more fatigue recently and some muscle and joint > pain. I was> > > > > > > wondering if you had those kinds of symptoms?> > > > > > > > Anything you'd care to share I would greatly > appreciate. I> > > > feel> > > > > > like> > > > > > > my body is revolting against me. LOL> > > > > > > >> > > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> > > > > > > > > > > > > > > > > > > __________________________________________________________> __> > Meet the new AOL.ca. Free radio, music, videos, news & > entertainment â€" with a Canadian perspective.> >> > > > > > ____________________________________________________________> Meet the new AOL.ca. Free radio, music, videos, news & entertainment â€" with a Canadian perspective.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Thanks Jane, Miss you guys. > > > > > > >> > > > > > > Zena,> > > > > > > I know you won't see this for a bit because of the time> > > > > difference but> > > > > > I was wondering if you could share with me what kinds of> > > symptoms> > > > > you> > > > > > have/had from the dermatomyositis? How was it diagnosed? My> > > doctor> > > > > is> > > > > > planning a biopsy of the rash and blistering on my hands but> I'm> > > > > having> > > > > > alot more fatigue recently and some muscle and joint pain. I> was> > > > > > wondering if you had those kinds of symptoms?> > > > > > > Anything you'd care to share I would greatly appreciate. I> > > feel> > > > > like> > > > > > my body is revolting against me. LOL> > > > > > >> > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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