Jacquie802 Posted October 28, 2006 Report Share Posted October 28, 2006 Hi Guys,So I went to my Endo apptmt yesterday and the urine tests they had me do (to measure histamine levels, etc.) came back normal. She got the head of the endo dept. to come in and they still have no idea what's causing my aweful flushing and night sweats! My doc even told me that they were talking about my case at a convention they had!So, here is where we are now. The doc ordered some plasma tests...does anyone know why plasma would be tested??? Also, the doc wants me to get in for a sleep study which would include the EEG, because he is wondering if I am having some type of seizure that is causing alot of my flushing and so forth..I didn't even know that could be a symptom of one?!Anyhow, does anyone have any ideas for me?? I feel as though I'm never going to get better...or cool down!Thanks,Jacquie Quote Link to comment Share on other sites More sharing options...
desiree942 Posted October 28, 2006 Report Share Posted October 28, 2006 Hi Guys,So I went to my Endo apptmt yesterday and the urine tests they had me do (to measure histamine levels, etc.) came back normal. She got the head of the endo dept. to come in and they still have no idea what's causing my aweful flushing and night sweats! My doc even told me that they were talking about my case at a convention they had!So, here is where we are now. The doc ordered some plasma tests...does anyone know why plasma would be tested??? Also, the doc wants me to get in for a sleep study which would include the EEG, because he is wondering if I am having some type of seizure that is causing alot of my flushing and so forth..I didn't even know that could be a symptom of one?!Anyhow, does anyone have any ideas for me?? I feel as though I'm never going to get better...or cool down!Thanks,JacquieOK not to blur the lines between television and reality, and not to in any way take away from your concern, but there was once an episode of Greys Anatomy where a patient had flushing and sweating and had an elective surgery to fix it...when they talked about what was wrong I think they were discussing ganglions -- or some parts of the nervous system...McDreamy the neuro was on the case. It caught my attention becuase I knew the terms from reading all the stuff on POTS/dysautonomia. The elective surgery the patient wanted was more serious than the actual flushing/sweating....that was the drama -- typical Greys stuff. Good luck! Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted October 28, 2006 Report Share Posted October 28, 2006 I remember that Grey's Anatomy. I hope they figure something out soon so you can get some relief. I know how hard it is when there are no answers.Dayna Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted October 28, 2006 Report Share Posted October 28, 2006 hey jacquie.. I'm sorry i dont have any suggestions for you.. in regards to flushing and night sweats..but wanted you to know that i am hoping that they figure it out for you.. and that you eeg goes ok for you.. hang in there girl....hugsdizz Quote Link to comment Share on other sites More sharing options...
ariella Posted October 28, 2006 Report Share Posted October 28, 2006 hihave you been tested for lyme/coinfections at a reliable lab? Babesia, a coinfection that comes with lyme, is famous for what you describe. I also get seizure like shaking chills, sweats etc. at night. I come out of it with a massive headache usually. ( I am positive for lyme)Anyway, seeing that you're from the NE, it may be worth checking out. Problem is the tests for coinfections are known to be even less reliable than lyme testing. The lab report said they pick up the coinfection in only about 20% of cases. So sometimes the only option is to try specific antibiotics for a couple of weeks to see what happens.Ariella Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted October 29, 2006 Author Report Share Posted October 29, 2006 Hi I actually mentioned lyme to my endo and she didn't think it was necessary to be tested for, so I don't really know what's next..I would just like some answers, like I'm sure all of us here do! Quote Link to comment Share on other sites More sharing options...
ariella Posted October 29, 2006 Report Share Posted October 29, 2006 Hi I actually mentioned lyme to my endo and she didn't think it was necessary to be tested for, so I don't really know what's next..I would just like some answers, like I'm sure all of us here do! Same here. My GP didn't even take me seriously when my western blot came back positive. My neuro couldn't believe it either, and would have been more comfortable telling me I had ALS. Everyone involved had no problem maintaing me on 40 mg of prednisone!!!but didn't even want to explore the possibility of lyme.They were taking what they knew about acute lyme and applying it to chronic neuro lyme, which is a different animal altogether.I went on for further testing, and was positive in another (not-tick specific) lab as well. I do not recall a bite nor a rash. (possibly a bite, for sure don't remember a rash) This was probably 16 years ago.It angers me that they let their "lots of crazy people think they have lyme and don't really have it" attitude get in the way of me even having proper testing done, let alone proper treatment that may help make me once again functional.Not saying this is what you've got, but it angers me that, especially as there is no differential being considered, that they won't even test you for this. I'll bet they tested you for lots of much more obscure things.Sending hugsAriella Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted October 29, 2006 Author Report Share Posted October 29, 2006 It is kinda crazy. I've had a rash on my neck for the last 10 years...It does go away with certain RX lotions but always comes back.. I know years ago I had a tick in my scalp but it was taken out...I was a little tiffed that they wouldnt even do the testing for it.. Quote Link to comment Share on other sites More sharing options...
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