some answers at apptment - more questions also...

[trc1962]

Back from my apt in Seattle with a rheumy who was very good. She had spent a lot of time on all my records, labs, etc. and really listened. I asked about my thyroid, my skin issues and the neuropathic feelings. She said rituxan would be her choice of treatment but she has doubt as to me really having sjogrens because I carry no antibodies and a lip biopsy that showed inflammation but not to the extent needed for sjogrens. She said I needed a neuro consult and an immunologist appointment to look at mast cell issues and she set these up in the same hospital for July 25th. She will work with these doctors to help solve the inflammatory issues as they can. She did do a lab panel and my TSH was lower (4.94) compared to 2 weeks ago at 7.49 but my t4 was in range but on the lower side. An interesting finding is that my red blood cell count was quite high (5.59) as was hematocrit (49) and hemoglobin (16) and my white count was super high - kind of weird, sluggy blood  it sounds like. So no real answers found, but pieces to the puzzle perhaps and some hope of maybe getting some answers in the near future.

[Sharon]

The mast cell suggestion is an excellent one.
I've been trying to get my doctors to take the notion of mast cell disorder seriously
but they are quite oblivious to it. The only testing I got related to this was a Tryptase test which
is very unreliable as a lone test and you must be in a flare during the testing for it to show in any case.

Do update us on any findings and treatments! 

[SjoGirl]

Super high white counts could mean that  you have an infection, are  you being tested for infections?

[trc1962]

I haven't heard from the rheumy yet, but expect to tomorrow. The lab sheet said "polycythemia" and so I will be curious as to what she says. If I remember right polycythemia is when the bone marrow makes too many red blood cells and it makes the blood too thick, increasing the chance of strokes. Online it said it can make you weak, itchy and achy with red skin on your face, hands and feet and I deal with all of that, though don't know if it is related. The immunologist specializes in mast cell issues and so I feel super lucky to be seeing him and asking lots of questions. Happy Sunday to all.