friday Posted September 21, 2004 Report Share Posted September 21, 2004 Hi. I haven't been officially diagnosed with POTS, although I have a strong suspicion that that may be causing some of my problems. I?ve been offline for a while so since I last posted I have seen a neurologist and a CFS specialist in NJ Dr.Podell. The neurologist gave me an MRI (which was normal) and didn't seem to want to deal with anything else. He told me since I was taking a beta-blocker that should deal with the POTS,like that was a cure. And he told me to see a cardiologist for a TTT. Seemed like he was passing the buck, on that one. Don't neurologist also give TTT? Anyway, one of the first things Dr.Podell mentioned was POTS. He didn?t' say I definitely have it I think he wanted to rule out other things first. He took some blood tests, CBC, thyroid, iron, etc. which came out normal. I haven't made a new appointment with him yet because he had also wanted me to get an ATCH test, which I still have to get, and a blood volume test (I don?t know the specific name for that). The hospital that was supposed to do that however now says they no longer do that test. So Podell is going to call them and see about it. In the meantime I'm waiting. I asked about a TTT but he said it was a really horrible test to have to go through and since he had my records (I take my blood pressure and heart rate several times daily and write it down) he could see that I have a problem with low blood pressure and high heart rate. He said it already told him what a TTT would so why put myself through it. Okay so now I?m waiting, seems like I?m always waiting. I have had a lot of trouble with breathing lately and it is really horrible. It?s hard to relax when you can't breathe. What I am wondering is do I have a nurological problem? I think so but I'm not being treated as such. I mean the neurologist is supposed to take care of that isn't he? I have had what seems to be apnea in which I wake up gasping for air, or it happens as I fall asleep. I read about central apnea and that is neurological. I don?t seem to get it all the time. I even had a sleep test done last year, nd it didn?t happen then.( although I only got three hours sleep) It?s not that I?m really worried about the apnea , it just seems to be another thing that points to something nuerological. I've also had numbness and weakness in my limbs so bad i felt I couldn't walk. I also have restless leg syndrome. I?ve read that also is due to the nervous system. I have an appointment with the neurologist again and I really don?t know what to say. I just want someone to help me and they act like it?s nothing don?t worry about it. I read a lot about things, and it seems to really sound like me, but then I go to a doctor and I get no help. It doesn?t help that I have such brain fog I get confused and have a hard time explaining things to the doctor. I have to go back to the neurologist and I just know he?s going to say the MRI is okay so I?m fine. Or he?ll say it?s anxiety related. The only thing making me anxious is being sick and having to deal with doctors. Any suggestions?Sue Quote Link to comment Share on other sites More sharing options...
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