Quote:
Originally Posted by daniella
Hi
On the thought about chronic pancreatitis. I had this about 6 years ago pre all of this. Anyhow I did not have all the symptoms either but after testing I was dx with it. Im not saying you do but I dont think you have to have all the symptoms. I was placed on a special diet and my bloodwork was monitored etc.
I am sorry you are not getting answers and in my experience it seems that most doctors only stay in the speciality they are in. What I mean is that they dont connect symptoms always. So it does not surprise me that the neuro felt the gi is separate. It may not be connected but sometimes I feel they just dont want to go out of the specialty they are in.
Have the doctors suggested any type of meds or treatment? Have you been tested for Lupus?
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Do you recall what testing they did to uncover this? I actually just saw my GI doc today, had a double dip endoscopy and colonoscopy (everything was fine),and I mentioned a possible gallbladder, pancreatic, etc. issue since the colon, stomach and esophagus have checked out ok... Iaskedabout doing an MRCP, I read this is very effective at evaluating those organs for any issues.
My Neuro (atleast one of them) has been good at working with my GI, I guess because he specializes in neuropathies and sees a lot of gastroparesis that sometimes accompanies them, but besides that its like all the specialists are disconnected from eachother like you said, my care feels very fragmented and I believe that is a large reason why things have yet to be figure out.
Docs have not suggested any meds really...zofran for the nausea and the midodrine but thats about it.
I think lupus has been ruled out, CRP consistently 0.1, ESR usually 2-5 (think those are markers?) ANA (tested x6), ANCA, anti ro/la, and Myeloperoxidase Ab all negative, but I checked the lupus website and there are more marker tests that have not been done, although I'd think one of the above would be off...thought I read that ANA is positive in about 90% of cases.