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Originally Posted by mrsD
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Chromogranin A was tested on 4/11/12, it was 34 ng/ml, ref range 0-95 (which looks a little high, but I guess it can vary)
Also had urine 5-HIAA test same day, which was 2 mg/g, ref range 0-14
I see my PCP today and will mention the other test though, maybe he will order it.
Quote:
Originally Posted by en bloc
Here's my thoughts on the 'good day'. You state you have GI symptoms 24/7, so I assume they were present during the test, right? If so, then it's obviously not gastroparesis. If your symptoms were not present during either test then I'd guess it would leave that window open...but only slightly, as I would think even a mild delay would be noted on a 'good day' if this was a significant problem. Of course being tested while you're experiencing symptoms is best, but doesn't always work out that way.
Your BP sounds good. Are they treating the POTS and tachy rates?
Sjogren's patients have dry mouth all day, not just upon waking after mouth breathing in the night. Same for dry eyes...foreign body sensation, gritty, and lack of tear production. I missed reading that you had the labs (SSA & SSB). Keep in mind that only 40% of Sjogren's patients have positive labs. The lip biopsy is required by most criteria for confirmation. Sure there have been some with negative procedures. You'd likely be able to find horror stories about any type of biopsy...or even a tooth extraction or ear wax removal, if you're reading this online. I have talked to a couple people that truly had a bad experience, but most did fine. I have a tiny little lump that's numb, but certainly not noticeable or bothersome. I would suggest though (if you choose to have it done) that you do so in a hospital that does many-- by a doctor with good amount of experience. Ask questions about their procedure, biopsy grading scale, and experience...be an informed patient.
As for the urination. Is your input consistent with your output? I don't see a glucose tolerance test (long one) among your list of completed tests. As MrsD mentioned earlier in this thread, impaired glucose can account for increase urination.
Where was the rash you mentioned? Did it itch? How long did it stay?
Sometimes (most times) diagnostics is like a puzzle. You can spend months(if not years) investigating to find a cause...and still not find it in some cases. You cannot expect to get diagnosed online. We are here just to help explore ideas so you can have intelligent and helpful discussions with your doctor so they may get you some answers. I would suggest that you at least seek out treatment for the bothersome symptoms you have while you continue your search for causes. There are a variety of treatments for POTS and many options to help alleviate your GI symptoms. Discuss these with you doctor.
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I totally understand, any help with possible ideas is much appreciated, my docs (for the most part) are open to my thoughts and suggestions, and much of the testing that has been done has been brought up by me, so anything is welcome.
Gegarding the gastric emptying, I was def having symptoms the first time I had it done and also this most recent time, maybe to a lesser degree. I would also think there would be some small sign of delay, but the resuls dont show that. GI insists that it could still be delay issue and says the tests arent very accurate (well then why ever order them, lol). I have a "smart pill" procedure in a few months will Dr. Kuo @ Mass General, all he does is motility so hopfully he'll give a percise answer, doesnt help now though.
Yes, thoguhout, for the most part my bp has been good, never drops much upon standing and does what it should, however itis much lower than it use to be prior to this. Use to run mid-120's/high 80's... as far as treatment, they said they'd prefer not to add meds because the numbers arent severe enough, but considering how bad I feel.. They had me try the high sodium (5 gram) and high fluid (3L+) diet to raise my blood volume/bp but I didnt notice anything. I also read that if you are deficient in certain hormones (i.e., aldosterone, etc.) increasing salt wont help much... might it be worth checking to see if I have the correct levels for the sodium/fluid treatment to work?
Regarding Sjogrens, I thought this may be a possiblity all along, but my version of "dry eyes" and "dry mouth", although a bit bothersome to me, dont seem to match up with what I read people describing online...I'd really like to find a Rhuem that will do the salivary gland ultrasound prior to jumping to the biopsy, maybe if ultrasound is 100% normal, then theres no need for biopsy (atleast from what I read)
Regarding the urination, I am having a 4 hr. OGTT test next week, not sure if they are testing insulin as well though. I cant really tell if I am putting out as much as goes in but I would probably say yes, although I thought the body should retain quite a bit of what goes in no? it almost feels like my body barely retains any of the water, but not really sure how to check this, other than testing certain hormones?
Regarding the rash, it was very strange, I will post a pic later on. It was flat, not raised at all, little pin dots, not itchy or anything (wouldnt even know it was there unless I saw it by lifting my shirt). Usually appeared on my chest, or abdomen, lasted roughly an hour then started to slowly fade. In the beginning it seemed to happen a few times a week, and as the time has gone on, the occurances seemed to spread to once weekly, every two weeks, and so on, last time it happened was probably like 2 months ago.
Again, I am welcome to any and all ideas and things I can raise ith my doctors, other possible conditions to explore, testing, etc.
Thanks
