ajw4790 Posted June 27, 2009 Report Share Posted June 27, 2009 Hi all,I am in the final stretch prior to moving to Springfield, IL and have been trying to cram as much dr. appmts. and testing in while still in Ohio. In a lot of ways I still haven't processed most of what I have learned/been told and hope maybe this will help... I am trying to think how far to go back...A couple of months ago I went to the allergist that actually knew about POTS and it's relationship with MCAD. I saw them the one time and had the blood tests that all came back fine. I hope they will do more in depth tests at the next visit I have at the end of next month. For the MCAD experts: Is testing complements 3 and 4 (I think-don't have stuff with me now) and methylhistamine (or something like that- my brain is FOGGY!) enough to rule it in or out? I am kinda afraid that just won't look deep enough into it... I also FINALLY had an appmt. with the sleep dr. Sounded like she did think that I do have Delayed Sleep Phase Disorder. I was glad she seemed knowledgeable about this! Shame I have to move away!!! So, she ordered the blood tests that I did and came back with that Ferritin level of 3!!! Which I will start treating with iron supplements. She also ordered an actigraphy test to see how much I move at night, but I have not had it yet... (waiting on equipment to become available). Anyone done this? And I also had the incredibly wonderful torture-filled sleep study... man, that whole thing was a trip! Not, wanting to do that again! (not so much the test, but the environment...). But, I was able to kinda sleep, I think they got a lot of good data. I was having a "good" RLS night to demostrate the leg issues. I also woke frequently, every noise woke me etc. Had some of my decent sized twitches too... But, have not gotten the full results yet... BUT, very unfortunately I do I have Obstructive Sleep Apnea, which I think is a big surprise to ALL my drs! Not happy due to not seeing myself wearing the CPAP machine! How many people here have sleep apnea (I know of a few)??? Also, anyone use/do any other treatments than CPAP?There is a bunch more of update and even more questions that I will wait for later on! This is already longggg!!! Thanks for reading and any info ya'll may have!!! Quote Link to comment Share on other sites More sharing options...
mkoven Posted June 28, 2009 Report Share Posted June 28, 2009 sounds like you're getting some good information! I'm sure you know to get copies of everything to bring with you. If you'd like, we can then swap notes about good docs in central Illinois and chicago. I',m going back in ten days.Michele Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted June 28, 2009 Author Report Share Posted June 28, 2009 Thanks Michele!!!Yes, I had tried to PM ya before when your box was full, and hadn't gotten back around to chatting with ya! Totally forward any names of drs to look up (or avoid) in the Springfield/Champaign area and Chicago. I will be looking for PCP, ANS neuro, possibly ADHD dr, endocrinologist, rheumatologist, cardiologist, possibly hematologist, sleep dr and clinic, ans an allergist. Any help/suggestions you may have would greatly be appreciated!!! THANK YOU!!!If anyone else has any suggestions PM me! I am looking for any and all info!!! THANKS! Quote Link to comment Share on other sites More sharing options...
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