Aa
Back From Houston = (
My news is nothing basically. Increasing my synthyroid from .88 to .1! Yeah woo hoo!!! Doing lip biopsy next Tuesday, but the ENT seemed like he tried to talk me out of it, as he is skeptical that if my labs showed nothing, that the biopsy wouldn't either. And it is painful, pretty good amount removed and big incision. Stitches inside lower inside lip.
I addressed the low D and high Calcium to both the Rheumy and Endo and really didn't get much. They both are very nice and seem extremely concerned. The Rhemy especially. Sent me for more labs and a chest x-ray. Mentioned a brain MRI ,not just the pituitary which is what they usually stress on. They both acknowledged the low D and high calcium but of course prefer to redo lab in 3 months to recheck. Told me do not take Calcium ever. Can add some D, as much as 2000mg. Try to get some sunlight as I am inside most of the time. I am concerned about taking the Vitamin D. What are your opinions??
Rheumy is checking for sarcodosis, but I doubt that I have that. I am beginning to think it is all in my head! Maybe I am just crazy. That might just be a relief.
He is supposed to start me on Plaquenil Tuesday after my lip biopsy. Even though I wonder if I should have it!??
If he treats me for Sjogrens anyway do I really need a diagnosis! I want one but......? If I had to apply for disability I guess I would actually need a true diagnosis, but I am still working, although it is a constant struggle. But I am not complaining..at least I have a job.
I am so confused?!?!?!!!!!! What should I do?? I am totally frustrated and get more and more disillusioned by the minute. I can hardly even think about it anymore.
Parotid Gland swelling was not really discussed! I showed my pictures to the ENT and he looked at them, spoke about what a difficult surgery it would be and that Dr Weber at MD Anderson was THE BEST and that if thought it would leave permanent facial paraylisis, that it probably would. He wouldn't attempt it himself. Said it would be extremely difficult. Said it may be best to leave it alone and maybe the plaquenil would help the inflammation and that I should return to MD Anderson and have the new testing procedure done to see if there could be something blocking it still. Said my auxillary parotid was very swollen and that it was very unusual, that he rarely has ever seen , must less felt one and that mine was very, very large! He then went into doing the lip biopsy.
Why couldn't I just be one of those people that has a problem, go to the doc, have some tests, and get a diagnosis and be treated? Oh well, maybe I will get an answer soon. I just need to stay positive and hope for the best! And that is what I plan to do. I am positively confused..lol ;) -sass-
I addressed the low D and high Calcium to both the Rheumy and Endo and really didn't get much. They both are very nice and seem extremely concerned. The Rhemy especially. Sent me for more labs and a chest x-ray. Mentioned a brain MRI ,not just the pituitary which is what they usually stress on. They both acknowledged the low D and high calcium but of course prefer to redo lab in 3 months to recheck. Told me do not take Calcium ever. Can add some D, as much as 2000mg. Try to get some sunlight as I am inside most of the time. I am concerned about taking the Vitamin D. What are your opinions??
Rheumy is checking for sarcodosis, but I doubt that I have that. I am beginning to think it is all in my head! Maybe I am just crazy. That might just be a relief.
He is supposed to start me on Plaquenil Tuesday after my lip biopsy. Even though I wonder if I should have it!??
If he treats me for Sjogrens anyway do I really need a diagnosis! I want one but......? If I had to apply for disability I guess I would actually need a true diagnosis, but I am still working, although it is a constant struggle. But I am not complaining..at least I have a job.
I am so confused?!?!?!!!!!! What should I do?? I am totally frustrated and get more and more disillusioned by the minute. I can hardly even think about it anymore.
Parotid Gland swelling was not really discussed! I showed my pictures to the ENT and he looked at them, spoke about what a difficult surgery it would be and that Dr Weber at MD Anderson was THE BEST and that if thought it would leave permanent facial paraylisis, that it probably would. He wouldn't attempt it himself. Said it would be extremely difficult. Said it may be best to leave it alone and maybe the plaquenil would help the inflammation and that I should return to MD Anderson and have the new testing procedure done to see if there could be something blocking it still. Said my auxillary parotid was very swollen and that it was very unusual, that he rarely has ever seen , must less felt one and that mine was very, very large! He then went into doing the lip biopsy.
Why couldn't I just be one of those people that has a problem, go to the doc, have some tests, and get a diagnosis and be treated? Oh well, maybe I will get an answer soon. I just need to stay positive and hope for the best! And that is what I plan to do. I am positively confused..lol ;) -sass-
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