Miriam Poorman-Knox Posted February 3, 2005 Report Share Posted February 3, 2005 I spent 2 weeks at Mayo, saw Dr. Low and many others. Had a good exam, and follow ups. I'm still not sure where I stand. I know through the cardiologist that I have mod-severe pots. My hashimotos that I goe when my son was born 23 years ago is still active and I have a thyroiditis. My heart other than CHF is ok. I was barney for a couple days and that was OK. He changed a couple of my meds, and I do feel a little better. I feel that I wasn't my own advocate because I had a list of questions and didn't pull them out to ask. He didn't rush me. I had another place to be and I had a brain fart. Now I'll have to wait till I get his plan. Sadly I don't know what moderate to severe potts means. I just know that I cannot deal with heat. I thought I would be gleeful after my visit. But still unsure.Oh well enough rambling......Miriam Quote Link to comment Share on other sites More sharing options...
Ernie Posted February 3, 2005 Report Share Posted February 3, 2005 Hi Miriam,Nice to see you back. I am sorry that your visit did not go as you expected. What kind of tests did you have this time?Ernie Quote Link to comment Share on other sites More sharing options...
Jersey Girl Posted February 3, 2005 Report Share Posted February 3, 2005 Hello Miriam, I'm sure you will find out some answers from the reports when they are ready. It is overwhelming to be so thoroughly evaluated even when feeling ok, so considering the brain fog that we POTS sufferers normally have , it's not surprising that you forgot to ask all your questions. I hope you eventaully get some reassurance about your condition. I haven't been to Mayo but have been told it is first-rate. Take care, Martha Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted February 3, 2005 Report Share Posted February 3, 2005 Sorry you still have some unanswered questions. I actually felt a little rushed with Dr Low during the final appointment. I wrote down questions and taped everything but still felt like I left with some unanswered stuff. All in all I was pleased with Mayo and DR Low but just wish I could have had more time at the end to ask everything I needed. I didn't find the follow up to be that great. If you have questions after reading your report you have to be pretty persistent if you want a return call. Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted February 3, 2005 Author Report Share Posted February 3, 2005 You are right, he really doesn't make you feel rushed, just heres this and this. Also I went alone, I don't recommend that . I am hoping the report comes soon. Miriam Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted February 3, 2005 Author Report Share Posted February 3, 2005 Hi Miriam,Nice to see you back. I am sorry that your visit did not go as you expected. What kind of tests did you have this time?Ernie<{POST_SNAPBACK}>Sweat test, holter, cardio, 2different tilt table teats. Many labs. Fat analysis from my abdomen. ECG, thryoid ultrasound, arrrythmia check, electrical test of my heart. They we thorough. Miriam Quote Link to comment Share on other sites More sharing options...
Ernie Posted February 3, 2005 Report Share Posted February 3, 2005 Hi Miriam,You are right. The testing was thourough. I hope that you will get the answers you are looking for when you get the reports.Ernie Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted February 4, 2005 Report Share Posted February 4, 2005 Hey there mp-k, maybe you aren't smarter, but by meeting you and learning from you, THEY got smarter? So, in the "grand scheme" of things it was worth it...right?What sweat tests did you have? The QSART and the box? I hope you get your records soon. I think you'll feel better once you can read thru and call out to Dr. Low and get a sense of the "new picture" of what is going on. Hang in there!best regards, tearose Quote Link to comment Share on other sites More sharing options...
ginger Posted February 4, 2005 Report Share Posted February 4, 2005 Hi Miriam--I leave Sunday for my first Mayo appt Monday with Dr. Fealey (in with Dr. Low). Since you just came back... what questions would you (or anyone) suggest at the follow-up or anytime. My husband will be along and take notes and be in charge of the "the list." I've got a few questions already, but input from all of you would be wonderful.Want me to give Dr. Low a list for you? And your phone number!? Ginger Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted February 4, 2005 Author Report Share Posted February 4, 2005 Hi Miriam--I leave Sunday for my first Mayo appt Monday with Dr. Fealey (in with Dr. Low). Since you just came back... what questions would you (or anyone) suggest at the follow-up or anytime. My husband will be along and take notes and be in charge of the "the list." I've got a few questions already, but input from all of you would be wonderful.Want me to give Dr. Low a list for you? And your phone number!? Ginger<{POST_SNAPBACK}>YES I'll fetch my list and post them. Some are general for all of us, some my husband who understands dysautonomias wants to know, and I didn't think of.Be prepared to see other Specialists. They really were all great, no one even volunteers were ever rude or short. Let me know how you like the NEURO tilt a whirl(Imean table). Back soon with my list. P.S. I also ssaw that doc first, very nice. Miriam Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted February 4, 2005 Author Report Share Posted February 4, 2005 Hi Miriam--I leave Sunday for my first Mayo appt Monday with Dr. Fealey (in with Dr. Low). Since you just came back... what questions would you (or anyone) suggest at the follow-up or anytime. My husband will be along and take notes and be in charge of the "the list." I've got a few questions already, but input from all of you would be wonderful.Want me to give Dr. Low a list for you? And your phone number!? Ginger<{POST_SNAPBACK}>Dig it!!!!!!YES I'll fetch my list and post them. Some are general for all of us, some my husband who understands dysautonomias wants to know, and I didn't think of.Be prepared to see other Specialists. They really were all great, no one even volunteers were ever rude or short. Let me know how you like the NEURO tilt a whirl(Imean table). Back soon with my list. P.S. I also ssaw that doc first, very nice. Miriam Quote Link to comment Share on other sites More sharing options...
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