I am a 66 year old retired teacher who whet to a rheum because of severly painful wrist joints. She ran many tests which came back with a high ANA count. She did not ask me about dry eye or mouth and I didn't think they were related so didn't mention them. My ophlamologist has commented on my dry eyes and my dentist has mentioned how dry my mouth is. This last few weeks I have developed a wicked taste in the back of my tongue. I also suffer white, painful finger tips when going into freezer. So I am wondering if there is a specific, definitive test for Sjordens or is it dx with the combination of symptoms.
In addition to this I am stage IV breast cancer so attributed some of the symptoms to the disease or meds( fatigue, bad taste, etc) The rheum I saw said there was nothing more she could do for me, so I am thinking of seeing someone in NYC that may put it all together. Does any of this sound familiar to any of you. Is it possible to have Sjorden and not show up in the testing? Thanks for any input you can give me.
Welcome,
Have you gone back and mentioned the dry eyes & mouth to your rheumy yet?? This is important and would be a good place to start. It would also be a good idea to mention the white fingers (Raynauds). She may have more to offer you if she had all the facts/symptoms. You may also be limited on what treatments (for the moment) that you can do with the chemo.
I'm sure some of your chemo meds might be contributing to your symptoms, but you need to determine which (if any) came before you started the chemo.
As for your question about Sjogren's showing up in testing. You haven't mentioned what tests the rheumy ran other then ANA. Did he run an SSA & SSB? Have you had a Schirmer's test done by the eye doctor? There is also a lip biopsy. Some doctors will diagnosis based upon symptoms, others require what's listed in the basic criteria. I've attached the link below. If you notice, they will consider a positive lip biopsy even if both SSA & SSB are negative.
http://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/americaneuropean-consensus-criteria-sjgrens-syndrome/
Welcome to the forum. Another teacher, I think that is a dominant profession here. It sounds like you may have Raynauld's as well as Sjogren's. They seem to go hand in hand.
Spoon theory may help you understand your good and bad days.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Some of us have posted what we are taking in our signature.
Hi Annabelle :)
Welcome to Sjogren's world. Along with sore joints I'd definitely think it is worth mentioning the dryness to your rheumy. There are people in here who are what is called 'sero-negative' That is that the have a dx - from a rheumy - but it hasn't shown up in the blood work. For Sjogren's they look for SSA and SSB antibodies.
I hope you find the site useful. You'll certainly find it friendly and supportive.
Take care - Scottie :)
Welcome Annabelle,
You're in the right place.
Auto immune conditions, of which Sjogren's is one, have a constellation of 'co-conditions' that often are part of the illness.
It often takes years and years to identify and tie things together, and many doctors do NOT know much about Sjogren's.
In addition, the tests for Sjogren's may not become positive until you are well along in the syndrome.
I have never tested positive, but have a litany of the maladies that can accompany Sjogren's.
Lately, however, I am beginning to find possible OTHER causes for my conditions, so perhaps it don't have Sjogren's after all? OR I won't become sero-positive before the end of my life, as I'm almost 70, and only developed the first symptoms at 60.
One of the hallmarks of these auto immune conditions is the variety and complexity of symptoms, and the varied ways each of us respond to treatments!
Which is my long way of saying, Hang in there!
Welcome again.
Hugs
Elaine
Annabelle,
I do want to welcome you and just say I am so sorry for all you are going through. I do hope your treatment has put your breast cancer into remission. I think the others have given you great advice regarding pursuing your Sjogrens diagnosis.
Take care.
Anna
Welcome to our family here. I am so sorry you have had to go through so much. I would think about the symptoms I had before you started dealing with your present diagnosis. Let the doctors know about those too.
Feel free to ask any questions, make any comments, vent, and keep us updated on what you find out.
susanep :)
p.s. teachers were told due to high stress we come down with a lot. ::)
Thank you all for your warm welcome. I think I have come to the right place to find some answers or at least to have someone listen to my complaints!
The rheum. had said that it might take awhile for my ailment to show up in my blood work. She was suspecting lupus, but from what I have read, it seems more like Sjorgen's. As I said I never put my dryness together with the joint pain, although I would have thought she would have asked about it. I have some things to take care of with the breast cancer and after that I think I will try another rheumatologist. She did not seem very caring or particularly interested in tracking down what is wrong with me. At the insistance of my oncologist, she did prescribe a decreasing dose of prednisone, which did help, but the
joint pain is steadily getting back to where it was.
I am not on chemo right now for the breast cancer. It is solely in my bones and is being treated with hormonal drugs which do cause muscle and joint pain and fatigue, but doesn't account for the dryness or high ANA count. I did participate in a Phase II clinical vaccine trial at Johns Hopkins which was working with my immune system to help it recognize cancer cells.
No one else in the trial, however, has developed the symptoms that I have. I'm betting money on Sjorgens as i have had dry eyes and mouth way before BC dx.
Last year I diagnosed myself with hyperparathyroidism even though my hormone test came back high but within range. Through the internet I discovered there was more to it than relying on one test and found a specialist in NYC that diagnosed it right away. I had an easy surgery and felt better within hours.
Again, thanks for welcoming me to this site. Your are all so knowledgeable about your condition!
Welcome Annabelle! I will keep you in my thoughts and meditations.