The Road To Getting Diagnosis.

[margiebee]

khaarina I had a similar situation! Before I started seeing a cardiologist who specializes in POTS, I saw just a run of the mill cardiologist. He basically did an echo, tested my cortisol, and told me that I had anxiety and there's nothing else he could do for me.

But when I got my TTT done, my new cardiologist brought it to my attention that the old one had written "possibly POTS" on my record. He asked me why I didn't have the TTT done after had seen that doctor, and I said he didn't even mention it to me! I figure the first doctor just didn't even know what to do about it, since when I mentioned POTS in one of my appointments he said "that's an extremely rare illness" (yeah right) and "it would've shown up on your echo" (whaaaat?)

[robert elrod]

I hate it , just got back from new doctor today and they act like they have no idea what I've been diagnosed with. Still no treatment and get another appointment a month away. I cant belive this is such a mysterious affliction.

[Joann]

I am so sorry to hear that robert, and I totally understand. I am struggling right now with some odd flare and new unusual symptoms and have no doctor to really discuss this with. My primary has stated she does not know what to do. The specialists I am seeing at Cleveland, have not yet found anything, and doctors do not seem to agree with each other. All say I am not a usual presentation, lucky me.

I hope you find some help soon and that the rest of us do too.

[robert elrod]

I am so sorry to hear that robert, and I totally understand. I am struggling right now with some odd flare and new unusual symptoms and have no doctor to really discuss this with. My primary has stated she does not know what to do. The specialists I am seeing at Cleveland, have not yet found anything, and doctors do not seem to agree with each other. All say I am not a usual presentation, lucky me.

I hope you find some help soon and that the rest of us do too.

I hope you get some help soon. I have had the worst luck. My gp actually fired me last week when I finally came back from Vanderbilt saying I was too complicated and time consuming and I needed to find another doctor. To add insult to injury he had to add he doesn't believe I had anything but anxiety and only women get fibromyalgia and I wasn't flexible enough to have EDS3 . All of my diagnosis came from specialists he sent me to, but he still disagreed. I should have stopped seeing him a long time ago.

Btw how are you presenting that is such a challenge.

[Joann]

Robert - My odd presentations. Well, I guess I am looking more like hyper pots. But I am having so many problems with my left side. Except for blood pressure and pressure/tightness below the sternum, all of my symptoms are on left side. Left side of face, on the left side of the spine on my head, neck and middle back. Left arm, sometimes (and currently) left sided pain either right below rib or right above hip, and sometimes left leg around knee.

I am usual as that my problems are worse in morning, but hot showers usually make me feel better. Bending, stairs, exertion of any kind, sometime just certain positions make it worse. I do not get out of breath when I do stairs, but the above symptoms happen sometimes it will start immediately, sometimes an hour or so later. But bp goes up and I start sweating and get all the pain and tightness mentioned. The stairs cause extreme symptoms that can last weeks or end up in ER. I felt like I was learning my triggers but this recent one I can't figure out.

It seems like my blood pressure is more of a problem than my heart rate. My heart rate will jump and it did on the tilt table, but even on that they said it was irregular. One doctor felt it indicated POTS another thought it indicated something was wrong but wasn't quite sure what, just that it was irregular. I guess because it was going up and down, but mostly up. I am beginning to think that the bp meds that I am on may not be working so well and may be causing some of the problems now. Now I had these problems before going on them, but now it seems like the symptoms are occurring worse an hour or so after I take one of them and lasting forl any where for 4 to 6 hours. Of course, the doctors want me to stay on that one and stop the one I think is helping me! Unless I am bed bound, I usually feel a little better if I am able to walk a little bit, I know for others laying down helps, but I don't do that often because it usually will make it so much worse when I have to get up.

Some doctors felt that my main problem was my neck, and I do agree there is something going on there, but I don't think that could cause all the bp and digestion issues also. They are doing an MRI and MRA soon, to see if there any blood vessels messed up in there.

I sometimes think there is something wrong that they are missing and that maybe they need to do angiogram. I am on a waiting list for Dr. Grubb's assistant but there is over a 8 month wait. Sorry this is so rambling, I am really feeling awful since the Cleveland visit, last week I ended up in ER for the first time in a year and today is just as bad, plus I am dealing with a crying teenager who thinks her life is over and my illness is adding to her terrible life! Lol.

[robert elrod]

Robert - My odd presentations. Well, I guess I am looking more like hyper pots. But I am having so many problems with my left side. Except for blood pressure and pressure/tightness below the sternum, all of my symptoms are on left side. Left side of face, on the left side of the spine on my head, neck and middle back. Left arm, sometimes (and currently) left sided pain either right below rib or right above hip, and sometimes left leg around knee.

I am usual as that my problems are worse in morning, but hot showers usually make me feel better. Bending, stairs, exertion of any kind, sometime just certain positions make it worse. I do not get out of breath when I do stairs, but the above symptoms happen sometimes it will start immediately, sometimes an hour or so later. But bp goes up and I start sweating and get all the pain and tightness mentioned. The stairs cause extreme symptoms that can last weeks or end up in ER. I felt like I was learning my triggers but this recent one I can't figure out.

It seems like my blood pressure is more of a problem than my heart rate. My heart rate will jump and it did on the tilt table, but even on that they said it was irregular. One doctor felt it indicated POTS another thought it indicated something was wrong but wasn't quite sure what, just that it was irregular. I guess because it was going up and down, but mostly up. I am beginning to think that the bp meds that I am on may not be working so well and may be causing some of the problems now. Now I had these problems before going on them, but now it seems like the symptoms are occurring worse an hour or so after I take one of them and lasting forl any where for 4 to 6 hours. Of course, the doctors want me to stay on that one and stop the one I think is helping me! Unless I am bed bound, I usually feel a little better if I am able to walk a little bit, I know for others laying down helps, but I don't do that often because it usually will make it so much worse when I have to get up.

Some doctors felt that my main problem was my neck, and I do agree there is something going on there, but I don't think that could cause all the bp and digestion issues also. They are doing an MRI and MRA soon, to see if there any blood vessels messed up in there.

I sometimes think there is something wrong that they are missing and that maybe they need to do angiogram. I am on a waiting list for Dr. Grubb's assistant but there is over a 8 month wait. Sorry this is so rambling, I am really feeling awful since the Cleveland visit, last week I ended up in ER for the first time in a year and today is just as bad, plus I am dealing with a crying teenager who thinks her life is over and my illness is adding to her terrible life! Lol.

Sorry so late, have had a rough 5 days.

It sounds a lot like what I went through. It is hard, but do Google scholars search and print what you find. A lot of my pain they say is from fibro. Have you read any into fribro.

[Joann]

I have a friend who has fibro, she says I should check into it, But right now, I am looking into some neck/head issues, and am hoping this may give me some answers. Also am rechecking my vitamins levels, wondering if that is making it worse also! Thanks for the suggestions.