Hi Rach thanks for your post. I knew nothing of EDS and as I am behind here reading cause of eyes I still am. I was about to see a genetic specialist from Baylor that had started at the univeristy I go to but was so scared of another bad doc I backed out at the last minute. I had seen an older neuro on the POTS symptoms my internist said she felt I had cause I get so much better on IV fluids my daughter had pointed out. He speciized in autonomic dysf. What I didnt know was he specialized in labling people as mental and just takes stuff a person says in a nuts way. Like he asked what I drink and I first talked about the water I drink which special and does help. I said I was late to get a shipment and over the 1 1/2 days trying to drink other fluids only I got miserable again, so so dry and the POTS symptoms . Then I'd said I drink coke but am trying to cut back which my internist had incouraged some time back. He for reasons I have no idea on mentioned the coke remark and put some in quotes as if it was weird and said he felt I was not drinking enough and causing my symtoms!

That was the mild part!!!! It got worse as he went into MG stuff which is not why I was there. He said he could see that maybe the MG crisis was just the "dizzy" incident I had talked of. He denied I had autonomic dysfunction. Only thing he said I probably did have was low blood volume but wasnt gonna bother doing the test. I went to him to get the florinef. That was the beginning of the end at the univeristy.

Sorry to rant but this guy really blew any chance I had of getting a fair shake at the univeristy. The students I had at last appointment with that new neuro said to me they had read his report. I should have spoke up and said it was poppycock.

I am pretty sure I have POTS. I am peeing way too much and fluids dont stay in me. My internist had given me a paper on the symptoms and they all fit.

About your remark on switching family docs. Yes I just decided to do that too. Mine is a univeristy (where my other docs all were till recently) educated man. I draggged myself to him Friday and it was so painful in how he treated me I went into this awful place when I got home. With my stomach pain and med intolerance and intense dryness that is getting worse only some helped by IV fluids at this point he just wanted me to take nexium and not bother with the abdominal CT we had discussed previuosly. H told him the dry was so much. He checked my mouth and said I dont see it. I said I have been pushing water all day. And he said you r weight is the same and something else and them said "I think you just think you feel you are dry." If I hadnt been breathing so so badly from dragging myslef to him on a day I needed to rest I would have debated the issue like I had lost weight, 3 pounds since March 9th and with my Sjogrens if I dont start drinking first thing in the morn I can have stuff catch in my throat or just hurt it too from the dry. Been doing it for years.

I need to change this week or something as I doubt he will pursue the abdomimal issue in a responsible way.

I would be interested in how you are doing with the florinef. I would give anything to keep more fluids in me. This is nuts! I got my IV fluids yesterday and after 2 bags I still had dry mouth and I woke early this morn with my intensely dry nasal passages in so much pain I had to get up and drink, eat and get mestinon in me which is the only thing for now that gets my nose, eyes and mouth moist to some degree.

Annie59