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About baja170

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  • Birthday 04/25/1962

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    Ft. Myers, FL

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  1. Thanks for the advise Melissa! I especially liked your idea of putting my questions down on a piece of paper so I can hand it to the physician. Karen
  2. I'm travelling from Ft. Myers, FL to Rochest, MN next week, and I want to make sure I don't forget to ask an important question, since it seems this "animal" is so complex. Is there anything I should make sure I know before I come home? I really want to make the most of this visit, and when I'm tired I get very confused.
  3. I also had ulcerative colitis. I am going to Mayo in 2 weeks for testing to see if I do have POTS (which I'm sure I do, just don't know to what extent). The interesting thing is that back in 1995 my colitis got out of control after I had a viral infection. I wound up having my entire bowel removed. Here is where it gets interesting...after surgery the surgeon told my husband "it wasn't as bad as I thought it would be". Did I just have a surgery I didn't need to?? Mayo also did my bowel surgery, so it will be very interesting to see if they think there is a relationship. Best of luck my fri
  4. Thanks for your reply Lauren. I'm glad to hear they took good care of you. Your information will be very helpful going into this thing.
  5. I just found out I have an appt at Mayo, Rochester with Dr. Robert Fealey. Has anyone else seen him? I'm just thrilled I finally got in. I have read many of your posts about Mayo, but couldn't find out how many days you were there for all the testing. I'm coming up from Florida, and my parents are taking me. I know everyone's situation is different, but I just thought I'd get a general idea. Thanks! Karen
  6. Just don't give up hope. I sent my records in to the Neurology dept. at Mayo back at the beginning of July. Mid August I recieved a letter stating that "they are not able to grant me an appointment at this time". They must have however, forwarded my information to the dept. of Endocrinology (I have some major endocrine problems), and I got a letter this weekend telling me I have an appt. in Rochester on Sept 20!!!! I live in Ft. Myers, FL, and now I have to be in Minnesota in 2 weeks! No, I'm not complaining, it just seems so odd that after trying so hard to get in, get a denial, and now
  7. Has anyone just gone to Vanderbilt for a diganostic work up for POTS and not gone through their research protocol? I'm on a lot of meds, most of which I cannot stop, and don't know if they'll accept me just for a work up if I don't fit their research protocol. I sent in my application this week, I'll let you know what happens. Also, do they do the same kind of tests that Mayo does (sweat test, etc...)?
  8. That is an excellent point! Thank You!!
  9. Kel: Don't have an answer for you as I'm new to the group, but thanks for asking. I was wondering the same thing. I'm originally from Green Bay, and this may be Brett Farve's last year (Packers)...could be a long season without a brewskie in there somewhere! Karen
  10. Thanks, that's just the information I was looking for.
  11. I have not had a TTT yet, and am waiting to be worked up for POTS. In the meantime, I am taking my own orthostatic heart rate and BP measurements at different times thoughout the day. I understand an increase of 30bpm is used in diagnosing POTS, but does it have to increase at least 30 beats EVERY time? Sometimes mine are >30, and sometimes there only 20 something. I know that heat and dehydration can makes symptoms worse, but is there a "normal" amount of fluctuation? Thanks, Karen
  12. Alexia: Can I ask who you see as your Primary Care Physician? I used to see Dr. Debra McCormack in Bonita, but she recently moved to Alabama. I am currently seeing an Internist that is close to me, but I'm not sure if I like him or not....I really need a good primary doc. Thanks for sharing!! Karen
  13. Alexia & Cheryl: THANKS for the great info on the doctors in the area. I will definitely keep Dr. Thompson in mind if things don't pan out like I'd like getting into Mayo. Dr. Sunil and Talano sound like they might be really good for me as well. I know what you mean about Dr. Brodie; I do like him, but he is a very busy guy. I usually end up seeing his PA, which is OK for the most part, but when I'm having trouble with my meds and have to get a ride down to Naples, (I cannot drive due to a loss in vision), it would be nice to actually see a doctor. I would be very interested to know m
  14. Alexia: My Cardiologist in Ft. Myers/Bonita is Dr. Corbellini and I also see an Endocrinologist in Naples, Dr. Brodie. I appreciate the encouraging words to hang in there with Mayo. Sometimes after a while you start to wonder if you're doing the right thing.
  15. I am new to the group and haven't officially been diagnosed with POTS yet, but I have a question. All I want to do is SLEEP! Is this a normal symptom of POTS? I usually sleep 11-12 hrs/night and still want to take a nap in the afternoon. I don't know if this is from POTS or something else going on. Thanks!
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