New problem - does it all go together?

[annabelle]

i wrote a few days ago, suspecting I have Sjogren's - high ANA (but no Sjogren's antibodies), painful wrists, blurry vision, dry eyes, dry mouth, extreme fatigue (also have breast cancer so attributed the fatigue to that).  Now I am adding difficulty swallowing, especially hot or very cold liquids, discomfort in my throat and chest and feel slightly nauseous and bloated.  Could this be part of it also?
My rheumy does not seem to take me seriously or  else thinks it is all part of the breast cancer and doesn't want to deal with it.  My onc. doesn't see this as cancer and has recommended I get another rheumy, which is my next step.  I am fearful that since I don't have the antibodies, it will be the same story.  I am most curious about the swallowing and discomfort.  Does anyone else experience this? 

[DragonflyC]

Do you know your ANA level? If it's over 1:160 then it's likely that you have something autoimmune going on. If your rheum won't help you and you can't find or switch to a new one, you might try working with your general practitioner. A GP would need some coaching, but they are usually more open to that than a rheum. If you just say, "I know it's not your area, but my rheumatologist doesn't have any ideas to help me," you may get the help you need there.

Wishing you well,
C.

[Sooki]

You can be diagnosed with a lip biopsy, without any positive blood results.  I'd say you should try a new rheumy and see what s/he says first.  Especially since your oncologist doesn't want to own a lot of your symptoms.

[jmkboyer]

Some rheumatologists just don't get it.  My first one refused to diagnose me even though I had a high ANA and all the classic symptoms.  Apparently he had a hard time dx'ing because he kept wanting to see more bloodwork confirmation.  Grrr.  My second rheumy, who is the dean of rheumatology at our state university medical school, immediately diagnosed me based on the high ANA.  So run, don't walk, to a new rheumatologist.

MB

[eyeamdry]

Annabelle, I am confused about the drs not doing anything for breast cancer.  Sjogrens is not high up on the line when you are dealing with a cancer also.  Are you having treatment for cancer:  Surgery:  Chemo:  If you do not have a dr treating you aggressively for cancer, then you are missing the boat. 

I was dx with Sjogrens 5 years ago.  I then was dx with breast cancer 6 months after that.  I kept doing what treatment I was on for SJS, but the cancer treatment then took a front seat. 

I don't mean to scare you, but you need a new dr-onw who will treat your cancer.  If he/she can do something for the Sjogrens also, great.  I may have misunderstood and you may be getting cancer treatment. But mp-this doesn't all go together.  Sjogrens is many things, but it will not kill you.  Cancer can be many things, but it can kill you if not treated.  Please let us know when you have drs lined up.  Lucy

[annabelle]

Lucy - I probably didn't write it clearly.  I am being treated very aggressively for the breast cancer, both locally and at Johns Hopkins.  Along the way I developed severe pain in my wrists.  Thinking it was arthritis, I went to a rheumatologist.  After my blood tests, the ANA came back very high she said, but never asked me about dryness or examined me - had me come back a month later and retested with same results.  She said there was nothing more she could do for me and recommended that I see a hand surgeon to get shots in my wrist joints.  I told my onc what was going on and he says it is not related to my cancer and I should see another rheumy.  Somehow, I stumbled on to Sjogren's which seems to fit all my symptoms except the blood test for Sjogrens does not come back positive.

I really even hate dealing with another condition, but my wrists are miserable and now this difficulty with my throat is driving me nuts.  I see my onc at Johns Hopkins next week and get bone and get full body CT scan so maybe they will see what is going on, after that it is on to a rheumy at Columbia Presbyterian in New York.  Thanks for your reply and concern.