Re: Re: Salivary gland biopsy

[Guest guest]

Caro,

My Sjogren's went undiagnosed for about five years. I had two severe cases of dry eye in that time and neither opthalmologist looked for a cause. Last summer, I suddenly had six cavities out of the blue, because no saliva equals cavities. Dentist kept asking me what I was doing differently...candy, soda, teeth brushing habits? No dx from him either. For quite awhile (years), I had to drink something with every bite to make it go down. Who would think to put all those things together? I'm sorry you had to have that biopsy!! I am now just brushing and flossing all the time and using artificial tears frequently. Dentist wants to put sealants in teeth that have bumpy surfaces( Insurance does not pay the 300.00, so I'm still debating). He says to drink water with floride instead of bottled water. There is even a kid's bottled water that has floride, but too expensive for me to mess with. I also got a kid's liquid floride get to

put on my teeth at night. I do still wear hard contact lenses that are medically necessary for Keratoconus, another eye condition. I am loosely dx with undifferentiated connective tissue disorder, but have no signs of lupus, RA, or scleroderma...yet.

As far as a cause of PF,it's made me wonder about when I was under five years old. We lived in Colombus, Mississippi on the AF base. They sprayed DDT for bugs periodically. We would all go jump in the fog, while our parents watched. "Bug spray man, bug spray man!" We almost got as excited as with the ice cream man! Then, of course, I went back inside my house where both my parents smoked like chimneys. I have never had a great lung capacity, even as a child. I would always be one of the last ones around the track, huffing and puffing. Anyone else ever jump in bug spray fog?

From: Joyce <jdalton501hotmail (DOT) com>Subject: Re: Salivary gland biopsyTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 6, 2008, 1:11 PM

Caro,

I have been diagnosed by bloodwork and symptoms. I just think all that torture that you went through was unnecessary. ...but, then I am not a doc. I am so glad that they never did this and I will never let them, now that I know. Sometimes I think the medicos just sit around dreaming up torture methods. I for one am tired of suffering.

I will pray for your pain relief and fast healing. Just take those pain pills and sleep.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> Caro... oh my golly I'm so sorry to hear about the procedure and results! I had no idea the results could be as you say. I hope the pain doesn't last long and you soon will recover. When you can do this> > Hear me talk! > then we know you are ok!> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!> > Salivary gland biopsy> > > Hi all,> > Well, I had the biopsy of my salivary glands on Tuesday. They gave > me Versed for the procedure so I was pretty out of it for the rest of > the day. My dad drove me back. As soon as the

numbness wore off, > OMG!! It was horrible!! If anyone told me again that I would need > this done to diagnose Sjogren's, I would not do it!! I have been > living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all > week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? > Only 1 pound!! So I still have 19 pounds to go before I go back to > the pulmo in 3 months. I guess 1 is better than none, but I have > been starving all week!! Even though I have been on so many pain > pills I really haven't been hungry anyway. My lip was so swollen > when I got up Wednesday, I looked like somebody had beat the crap out > of me. By Wednesday night, I had started bruising on the outside of > my lip. By Thursday, still had fat lip with more bruising on the > outside, plus the nurse had to try 3 times to get the IV in, and the > second try she did, the vein

totally blew and a huge knot popped up > and now I have a dark black and blue bruise on my arm bigger than a > silver dollar. I have been surviving on Lortab and Lorcet for the > whole week since Tuesday. I haven't done any exercise at all this > week. I had fever Wednesday and Thursday. Today was the first day I > have actually tried to chew anything and I can only chew if I eat on > the left side and if I take really small bites. I know it could be a > lot worse, especially after reading the posts from Vicky and Joyce, > and I am not complaining, just simply saying if I had it to do over > again, I would have told them just let the blood test be enough for a > diagnosis for me. I am very hesitant now to even go to the eye > doctor and get the tear duct study done. I don't have a clue how > painful that will or will not be. > > Well that is how my week has

been. I hope you all had a great Fourth > of July. I didn't get to do any cooking out or anything cuz I > couldn't eat, but I sure wanted to.> > At least today I can drink without using a straw and that is a real > plus!! > > Hope you all have a great night!!> > Caro>

[Guest guest]

Caro,

My Sjogren's went undiagnosed for about five years. I had two severe cases of dry eye in that time and neither opthalmologist looked for a cause. Last summer, I suddenly had six cavities out of the blue, because no saliva equals cavities. Dentist kept asking me what I was doing differently...candy, soda, teeth brushing habits? No dx from him either. For quite awhile (years), I had to drink something with every bite to make it go down. Who would think to put all those things together? I am now just brushing and flossing all the time and using artificial tears frequently. Dentist wants to put sealants in teeth that have bumpy surfaces( Insurance does not pay the 300.00, so I'm still debating). He says to drink water with fluoride instead of bottled water. There is even a kid's bottled water that has fluoride, but too expensive for me to mess with. I also got a kid's liquid fluoride get to put on my teeth at night. I do

still wear hard contact lenses that are medically necessary for Keratoconus, another eye condition. I am loosely dx with undifferentiated connective tissue disorder, but have no signs of lupus, RA, or scleroderma...yet.

As far as a cause of PF,it's made me wonder about when I was under five years old. We lived in Colombus, Mississippi on the AF base. They sprayed DDT for bugs periodically. We would all go jump in the fog, while our parents watched. "Bug spray man, bug spray man!" We almost got as excited as with the ice cream man! Then, of course, I went back inside my house where both my parents smoked like chimneys. I have never had a great lung capacity, even as a child. I would always be one of the last ones around the track, huffing and puffing. Anyone else ever jump in bug spray fog?

Anyway, Caro, I'm so sorry you had to go through that terrible ordeal of torture with the biopsy!! If you're outside exercising, you are a dedicated woman. I admire your attitude!

From: Joyce <jdalton501hotmail (DOT) com>Subject: Re: Salivary gland biopsyTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 6, 2008, 1:11 PM

Caro,

I have been diagnosed by bloodwork and symptoms. I just think all that torture that you went through was unnecessary. ...but, then I am not a doc. I am so glad that they never did this and I will never let them, now that I know. Sometimes I think the medicos just sit around dreaming up torture methods. I for one am tired of suffering.

I will pray for your pain relief and fast healing. Just take those pain pills and sleep.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> Caro... oh my golly I'm so sorry to hear about the procedure and results! I had no idea the results could be as you say. I hope the pain doesn't last long and you soon will recover. When you can do this> > Hear me talk! > then we know you are ok!> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!> > Salivary gland biopsy> > > Hi all,> > Well, I had the biopsy of my salivary glands on Tuesday. They gave > me Versed for the procedure so I was pretty out of it for the rest of > the day. My dad drove me back. As soon as the

numbness wore off, > OMG!! It was horrible!! If anyone told me again that I would need > this done to diagnose Sjogren's, I would not do it!! I have been > living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all > week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? > Only 1 pound!! So I still have 19 pounds to go before I go back to > the pulmo in 3 months. I guess 1 is better than none, but I have > been starving all week!! Even though I have been on so many pain > pills I really haven't been hungry anyway. My lip was so swollen > when I got up Wednesday, I looked like somebody had beat the crap out > of me. By Wednesday night, I had started bruising on the outside of > my lip. By Thursday, still had fat lip with more bruising on the > outside, plus the nurse had to try 3 times to get the IV in, and the > second try she did, the vein

totally blew and a huge knot popped up > and now I have a dark black and blue bruise on my arm bigger than a > silver dollar. I have been surviving on Lortab and Lorcet for the > whole week since Tuesday. I haven't done any exercise at all this > week. I had fever Wednesday and Thursday. Today was the first day I > have actually tried to chew anything and I can only chew if I eat on > the left side and if I take really small bites. I know it could be a > lot worse, especially after reading the posts from Vicky and Joyce, > and I am not complaining, just simply saying if I had it to do over > again, I would have told them just let the blood test be enough for a > diagnosis for me. I am very hesitant now to even go to the eye > doctor and get the tear duct study done. I don't have a clue how > painful that will or will not be. > > Well that is how my week has

been. I hope you all had a great Fourth > of July. I didn't get to do any cooking out or anything cuz I > couldn't eat, but I sure wanted to.> > At least today I can drink without using a straw and that is a real > plus!! > > Hope you all have a great night!!> > Caro>