Birmingham

[Guest guest]

Hi all,

Well, finally got a call today from Dr. de Andrade from University of

Alabama at Birmingham. The results are in. Ultrasound of my heart

was okay. GREAT!! Chest CT showed that he thought my disease is not

as advanced as he thought from reading the CT report from my December

CT; however, he did not have my previous CT from December to compare

with, so I am bringing it to my next visit to see how fast I am

progressing. Next came the blood work. Here we go. He said the main

thing I want to talk to you about is the blood work. Okay, I am

ready. Something is wrong, because the doctor himself called me

instead of the nurse. I have never had that happen!! Anyhoo --

basically my blood test for Sjogren's antibodies came back positive.

So, I don't have scleroderma but I probably do have Sjogren's. At

least that would explain why I have PF. He said he doesn't want to

base a diagnosis on just a blood test, so he wants me to have 2 other

tests within the next month or so. One is I have to go to an eye

doctor and have a test to see how much tears my tear ducts are

producing. The other is I have to go to an oral surgeon and get a

biopsy on my salivary glands to see how much saliva I am producing.

He said a dry mouth is a symptom of Sjogren's. I always have a dry

mouth. Have had one as long as I can remember. When I told my mom

and dad what the doc said, my daddy told me they had to take me to

the doc when I was a baby because my tear ducts were " stopped up " and

whatever they did to my eyes, my tears shot across the room and he

cried whatever they did to me. The doc told me that Tonya, the nurse,

will call me tomorrow or Monday and give me an appointment to go and

get the tests done and have a definite diagnosis. He wants to up my

Imuran from 100 mg a day to 150 mg a day to be taken in the mornings

instead of twice a day and he wants to continue to decrease my

prednisone to 5 mg and within the next few months I will totaly be

off of it. I told him I had lost 7 pounds and he said for me to stay

healthy, keep exercising, and keep losing weight. The downside is

that the I don't qualify for clinical trials if I have Sjogren's.

The clinical trials are for IPF and if I have Sjogren's then that is

the cause for the UIP which the biopsy showed in January. BUT -- he

did say the the Imuran at 150 mg a day should slow down the disease

progress significantly so for that I AM ALL FOR IT!! Anything to

slow down the use for oxygen or the need for a lung transplant I am

all for it!! So, overall, I am really pleased with the report. Even

if it means I more than likely have another disease, he said the

medication can slow down the progress, so I am happy. Am I wrong to

be so excited? Any hope these days is a good thing to me. At least

I kinda sorta know what has been going on with me all this time.

If anyone else has a chance to go to one of the 13 facilities that

deal with this particular disease PF, definitely GO!! You can't go

wrong. Especially if you can go to Birmingham, I would totally

recommend it! They are the best!! Wow!! To have a doctor call me

personally, I feel SO SPECIAL!! Just totally made my day!!

Hope you all have a good night!!

Caro

[Guest guest]

I don't really see the necessity, either, but am going along with it. I had a really bad experience with a dentist when I was 15 and have been a real wuss ever since whenever I have a dental visit. I always have to have the happy gas, even to get my teeth cleaned!! I wish it was over with already. I am expecting I will come home with a big fat lip, probable bruising, and a numb face -- not really looking forward to it at all. I will keep in touch and let everyone know how it goes. Hope you all wish me luck!! I am glad to know about the spasms with the jaw. I never ever thought it was because there was no saliva being produced. I just know it hurts like HELL when it happens!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi---

Subject: Re: BirminghamTo: Breathe-Support Date: Saturday, June 28, 2008, 8:10 PM

Caro,

Yes, the pain you describe could certainly be Sjogren's. I don't know why dentists are not better schooled to recognize the symptoms. I have had my jaw lock up with one of those spasms while eating out and the people with me think that I am having a stroke. I can not even move or speak until it passes. It happens when I see or smell something really delicious and my glands are trying to salivate and can't. Just miserable.

I just don't see the necessity for that biopsy torture they are suggesting. Mercy!

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> > >>

> > Hi all,> > > > > > Well, finally got a call today from Dr. de Andrade from University of > > > Alabama at Birmingham. The results are in. Ultrasound of my heart > > > was okay. GREAT!! Chest CT showed that he thought my disease is not > > > as advanced as he thought from reading the CT report from my December > > > CT; however, he did not have my previous CT from December to compare > > > with, so I am bringing it to my next visit to see how fast I am > > > progressing. Next came the blood work. Here we go. He said the main > > > thing I want to talk to you about is the blood work. Okay, I am > > > ready. Something is wrong, because the doctor himself called me > > > instead of the nurse. I have never had that happen!! Anyhoo --> > > basically my blood test for Sjogren's antibodies came

back positive. > > > So, I don't have scleroderma but I probably do have Sjogren's. At > > > least that would explain why I have PF. He said he doesn't want to > > > base a diagnosis on just a blood test, so he wants me to have 2 other > > > tests within the next month or so. One is I have to go to an eye > > > doctor and have a test to see how much tears my tear ducts are > > > producing. The other is I have to go to an oral surgeon and get a > > > biopsy on my salivary glands to see how much saliva I am producing. > > > He said a dry mouth is a symptom of Sjogren's. I always have a dry > > > mouth. Have had one as long as I can remember. When I told my mom > > > and dad what the doc said, my daddy told me they had to take me to > > > the doc when I was a baby because my tear ducts were "stopped up" and >

> > whatever they did to my eyes, my tears shot across the room and he > > > cried whatever they did to me. The doc told me that Tonya, the nurse, > > > will call me tomorrow or Monday and give me an appointment to go and > > > get the tests done and have a definite diagnosis. He wants to up my > > > Imuran from 100 mg a day to 150 mg a day to be taken in the mornings > > > instead of twice a day and he wants to continue to decrease my > > > prednisone to 5 mg and within the next few months I will totaly be > > > off of it. I told him I had lost 7 pounds and he said for me to stay > > > healthy, keep exercising, and keep losing weight. The downside is > > > that the I don't qualify for clinical trials if I have Sjogren's. > > > The clinical trials are for IPF and if I have Sjogren's then that is > > > the

cause for the UIP which the biopsy showed in January. BUT -- he > > > did say the the Imuran at 150 mg a day should slow down the disease > > > progress significantly so for that I AM ALL FOR IT!! Anything to > > > slow down the use for oxygen or the need for a lung transplant I am > > > all for it!! So, overall, I am really pleased with the report. Even > > > if it means I more than likely have another disease, he said the > > > medication can slow down the progress, so I am happy. Am I wrong to > > > be so excited? Any hope these days is a good thing to me. At least > > > I kinda sorta know what has been going on with me all this time.> > > > > > If anyone else has a chance to go to one of the 13 facilities that > > > deal with this particular disease PF, definitely GO!! You can't go > > > wrong.

Especially if you can go to Birmingham, I would totally > > > recommend it! They are the best!! Wow!! To have a doctor call me > > > personally, I feel SO SPECIAL!! Just totally made my day!!> > > > > > Hope you all have a good night!!> > > > > > Caro> > >> >>