ethansmom Posted May 15, 2004 Report Share Posted May 15, 2004 I have been having problems with my doctor for about a year now, but lately it has gotten ridiculous. He diagnosed my POTS and has been treating me for 2.5 years, and I am thankful that he was there and helped me when I was so sick- he was so compassionate and caring and bent over backwards for me all the time. He even offered me a job and I was working for him part time for a while, which made it easier to access him when I had a question or issue. BUT now I'm not working there anymore (see previous post from April, they just up and closed the office I was working in one day out of the blue). So I am having the hardest time getting ahold of him now. I went for an office visit 2 weeks ago, and when I drove an hour to get there, he wasn't even in the office that day and no one bothered to call me and let me know! So I had the other doctor he works with (who doesn't even treat POTS) order some bloodwork on me, and the Epstein-Barr test came back positive which *could* explain why I've been sleeping all day lately and feeling just awful- and I couldn't wait to discuss the results with him because it's another avenue we haven't explored. But I put in phone call after phone call and he never bothered to call me back- and yesterday I called my friend that I used to work with there and explained the situation, and she put the test results in front of him along with my phone number 5 times that day and he STILL never called me. Instead, he had her call me back at the end of the day to tell me to increase my Florinef if I am feeling bad, and that the test probably meant nothing but the fact that I might've been exposed to EBV at some point in my life. I know that could be true, but I was also hoping he would care a little more than that and possibly do more bloodwork or testing just so we might know more about how I contracted POTS and look into Chronic Fatigue a bit more.I was livid, because if he took the time to look over my chart and stuff, he would know that I cannot tolerate any higher of a dose of Florinef than what I am taking already, and that I've been having these viral flare-ups on a regular basis and would like some answers. He just acts like I have to deal with this and we'll never know why I have it and Florinef is the only answer for everything.I have no options at this point as far as doctors are concerned because I have no insurance, and this doc treats me for free. I thought about seeing Dr. Khurana in Baltimore, but I've heard that he won't treat anything without repeating all the tests- which would cost me a fortune that I don't have. SOOO...I just wanted to vent about how stuck I am right now, and how awful I am feeling every day. I could sleep 12-15 hours and still be too tired to move. And I am so dizzy/lightheaded that I can't even stand to go in stores or anything...and I was doing so well for over a year, I just don't understand what is going on, and it's been a solid month of this with NO good days. I am down in Florida right now, and I can't even go to the beach or play outside with my son...this really bites. My parents are taking him on his first zoo trip tomorrow....and guess who gets to miss it?Thanks for listening to my ranting everyone...any suggestions would be appreciated Quote Link to comment Share on other sites More sharing options...
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