Hi everyone. For the past 16 months I have been treated for undifferentiated connective tissue disease because my RD couldn't be sure what was going on. On my last visit he said I'm no longer undifferentiated, based on my response to the RA drugs (MTX and Plaquenil) and have been diagnosed with Sjogren's Syndrome (even though I don't have dry eyes or mouth) and lupus. Now that I've done some research on lupus, I'm really worried. I'm hoping to learn more through this forum and hopefully have some of my fears calmed. Of course I will contribute information and support where appropriate once I get a handle on all of this. Anyway, I just wanted to introduce myself before I started reading all these threads. I expect I'll learn a lot here.
Newly Diagnosed and Worried
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Hi Jesse,
Welcome to the forum.
There is a lot of information on Lupus available. Some of it is very scary. The thing to remember is that few people have all those symptoms. Most are able to lead fairly normal lives.
It is great that you have already responded to the medication. Other things that will help are getting enough rest, eating a healthy diet and exercise. In time you will learn to listen to your body. Mine gives me subtle signs that something more is happening and if I pay attention to it I can sometimes head off a full blown flare.
Feel free to post any questions you might have. Also check out the chat room. It is a great way to find out how others deal with the day to day issues.
Take care,
Lazylegs
Welcome to the forum.
There is a lot of information on Lupus available. Some of it is very scary. The thing to remember is that few people have all those symptoms. Most are able to lead fairly normal lives.
It is great that you have already responded to the medication. Other things that will help are getting enough rest, eating a healthy diet and exercise. In time you will learn to listen to your body. Mine gives me subtle signs that something more is happening and if I pay attention to it I can sometimes head off a full blown flare.
Feel free to post any questions you might have. Also check out the chat room. It is a great way to find out how others deal with the day to day issues.
Take care,
Lazylegs
Joined
·
553 Posts
Hi Jessie
and welcome to the site. Just wanted to say that the people here have a wealth of knowledge to help you. I have found them really friendly and always ready to offer advise when I have needed it.
take care and look after yourself
Claire xxx
and welcome to the site. Just wanted to say that the people here have a wealth of knowledge to help you. I have found them really friendly and always ready to offer advise when I have needed it.
take care and look after yourself
Claire xxx
Hi Jessie and :welcome:
This site is simply wonderful and a great help to all. I'm not diagnosed at the moment but no matter what query you have people around here are more than willing to help and give advice.
I'm sure you'll find everybody extremely helpful and caring as I have. Hope you are doing ok and will speak soon.
Mrs M
This site is simply wonderful and a great help to all. I'm not diagnosed at the moment but no matter what query you have people around here are more than willing to help and give advice.
I'm sure you'll find everybody extremely helpful and caring as I have. Hope you are doing ok and will speak soon.
Mrs M
Joined
·
150 Posts
Faces of Lupus
Hi Jesse 88
like you I have been looking at connective tissue problems,and actually have an appointment away from my city that has no specialists. I am also having nerve conductions tests here just before that.
While it may be true that some people do not have terrible problems re aps/lupus, there are some like myself who have had problems all our lives, and eventually when symptoms come in myriad, frightening symptoms, that's when it's good to see how others have had to cope, what doctors have/have not done, and like you researched how we can get d/x. I look forward to seeing your posts on how you are going. All the best.
Hi Jesse 88
like you I have been looking at connective tissue problems,and actually have an appointment away from my city that has no specialists. I am also having nerve conductions tests here just before that.
While it may be true that some people do not have terrible problems re aps/lupus, there are some like myself who have had problems all our lives, and eventually when symptoms come in myriad, frightening symptoms, that's when it's good to see how others have had to cope, what doctors have/have not done, and like you researched how we can get d/x. I look forward to seeing your posts on how you are going. All the best.
Welcome to the forum Jesse
I am not sure that you need be more worried especially in light of the reasons the doc gave for changing the diagnosis. It sounds as if he is hooked up to terminology whereas the main thing is how the connective tissue disease is affecting you, whatever it's called.
UCTD is a very definite diagnosis and you have been treated appropriately. UCTD usually means there are no distinguishing signs of any particular CTD. For lupus there are very few specifics, only two antibodies and a couple of biopsies. I have no evidence except what I read on forums but I am sure that many doctors diagnose lupus often with that awful word 'mild' attached to it while others are more pernicketty and will diagnose UCTD.
If some antibodies like anti ds DNA or anti- Sm have appeared then technically the diagnosis could be upgraded to SLE. Their appearance might indicate worsening disease or uncontrolled disease and indicate need for more effective therapy. If nephritis or lupus specific skin problems have started then too an upgrade would be in order.
To illustrate how meaningless it might be, I have an SLE diagnosis simply because I have enough criteria to fit into that particular box but my SLE is so limited it bears no comparison with other people's and it's ludicrous to even call it SLE.
The same sort of thing goes for the Sjogren's. Many of us have some Sjogren's symptoms along with our lupus especially if we have the anti-Ro antibodies. Dry eyes are especially common with lupus and are one of the signs for diagnosis according to some specialists. Some specialists won't diagnosis Sjogren's unless there's a positive lip biopsy. Treatment is much the same as lupus anyway depending on the symptoms.
Diagnosis simply means sticking a label on a set of symptoms. Some people fit neatly into a box with that label but many of us don't and have overlaps and individual presentations. Doctors don't always agree on the criteria meaning what constitutes a particular disease.
The main thing is to get suitable treatment tailored to individual needs.
All the best and no panic - your doc should be willing to explain his reasons. After all, an SLE diagnosis has serious implications for insurance everywhere, and especially health care insurance in the USA
Bye for now
Clare
I am not sure that you need be more worried especially in light of the reasons the doc gave for changing the diagnosis. It sounds as if he is hooked up to terminology whereas the main thing is how the connective tissue disease is affecting you, whatever it's called.
UCTD is a very definite diagnosis and you have been treated appropriately. UCTD usually means there are no distinguishing signs of any particular CTD. For lupus there are very few specifics, only two antibodies and a couple of biopsies. I have no evidence except what I read on forums but I am sure that many doctors diagnose lupus often with that awful word 'mild' attached to it while others are more pernicketty and will diagnose UCTD.
If some antibodies like anti ds DNA or anti- Sm have appeared then technically the diagnosis could be upgraded to SLE. Their appearance might indicate worsening disease or uncontrolled disease and indicate need for more effective therapy. If nephritis or lupus specific skin problems have started then too an upgrade would be in order.
To illustrate how meaningless it might be, I have an SLE diagnosis simply because I have enough criteria to fit into that particular box but my SLE is so limited it bears no comparison with other people's and it's ludicrous to even call it SLE.
The same sort of thing goes for the Sjogren's. Many of us have some Sjogren's symptoms along with our lupus especially if we have the anti-Ro antibodies. Dry eyes are especially common with lupus and are one of the signs for diagnosis according to some specialists. Some specialists won't diagnosis Sjogren's unless there's a positive lip biopsy. Treatment is much the same as lupus anyway depending on the symptoms.
Diagnosis simply means sticking a label on a set of symptoms. Some people fit neatly into a box with that label but many of us don't and have overlaps and individual presentations. Doctors don't always agree on the criteria meaning what constitutes a particular disease.
The main thing is to get suitable treatment tailored to individual needs.
All the best and no panic - your doc should be willing to explain his reasons. After all, an SLE diagnosis has serious implications for insurance everywhere, and especially health care insurance in the USA
Bye for now
Clare
Hi Mary, thanks for your post and good luck with your appointment. Sometimes it really is worse not knowing than to have a clear dx. Please keep us posted on what you find out.
Clare, thank you. Your comments do make me feel a bit better. I think the RD is still basing the dx on the positive RF (160), high, positive ANCA, ANA (speckled pattern), but then a different lupus screen was negative. No matter since, as you said, the treatment is the same. I'm just worried about the fact that the symptoms up to now have just been suppressed and the disease seems to be progressing. Maybe by studying the Sjogren's and lupus issues in depth I can come up with some answers. I can at least focus on just the two areas now. It's so true what it says at the end of your posts. "If patients do not look after themselves, nobody else will"
Dr Daniel Wallace, renowned lupologist.
Clare, thank you. Your comments do make me feel a bit better. I think the RD is still basing the dx on the positive RF (160), high, positive ANCA, ANA (speckled pattern), but then a different lupus screen was negative. No matter since, as you said, the treatment is the same. I'm just worried about the fact that the symptoms up to now have just been suppressed and the disease seems to be progressing. Maybe by studying the Sjogren's and lupus issues in depth I can come up with some answers. I can at least focus on just the two areas now. It's so true what it says at the end of your posts. "If patients do not look after themselves, nobody else will"
Dr Daniel Wallace, renowned lupologist.
Hi Jessee and welcome to the site.
As you can see many friendly people here !
I agree with Clare - well said !
The most important thing is to control your symptoms and it seems that you have been responding to the medications.
Many have been diagnosed, undiagnosed, told one thing by one doctor and another by another doctor.
So after reading so many posts on here, I have concluded to just continue trucking on with controlling symptoms and not paying to much attention to the name the doctors give it.
I hope that just by reading you will find some comfort.
As you can see many friendly people here !
I agree with Clare - well said !
The most important thing is to control your symptoms and it seems that you have been responding to the medications.
Many have been diagnosed, undiagnosed, told one thing by one doctor and another by another doctor.
So after reading so many posts on here, I have concluded to just continue trucking on with controlling symptoms and not paying to much attention to the name the doctors give it.
I hope that just by reading you will find some comfort.
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