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About 2manyfurkids

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  1. Thank you for all your responses. Looks like I'm gonna go. Can't put a price on your health, right? Will let you know how it turns out. Thanks again, Karen.
  2. Hi, I have an appt in Neurology at Mayo Clinic in Rochester,Mn at the end of April. They say the average stay is 5-7 days and it is very expensive. Obviously, you have to pay for a hotel but what about medical expenses. My insurance covers 85%. But, 15% of thousands of dollars or more can add up very quickly! We don't want to be paying them off for years and years. As much as I want a definitive diagnosis, I'm concerned about the expense. What sort of tests do they do? Can anyone give me an idea of cost? Are they more expensive than regular neurologists and hospitals? Thanks, Kar
  3. Thank you for all your responses. My endo got me into a nearby teaching hospital neurology dept with one of the docs listed on the DINET list. The appt isn't until mid-Dec but at least it is sooner than Mayo. I will keep my appt with mayo and just wait. Maybe after seeing local doc he can get me into Mayo sooner. Seems like just showing up at Mayo I might have to wait a few days and with kids and lots of animals I can't really do that. Thanks again, Karen.
  4. Hi, I am on the waiting list for Mayo(MN)for the neurology dept. Last week I was diagnosed with gastroparesis. They said the waiting list is 6-12 months. How did everybody that has been to Mayo get in, did you get a referral from your doctor and how long before you got an appt? Do you have any suggestions how I could get in sooner? My endo that referred me is "done with me" I think and gets her "assistant" to call me back. Karen
  5. Thank you so much for your responses. I am on the waiting list for Mayo Clinic(Minnesota) and it sounds like I need to wait it out. I live in Wisconsin so it is only a 5hr drive. Thanks again, Karen.
  6. Hi, I haven't posted in a long time. My doctors who originally thought Addisons Disease or Bartter's Syndrome are now back to the POTS diagnosis. My endo has referrred me to Mayo Clinic, but the waiting list is 6-12 months. Today, I had a gastric emptying study for gastroparesis. Otherwise, I feel like maybe I should wait for Mayo rather than go to another neurologist because I'm on Florinef already and with the help of this website, I can do what I need to do to feel as good as I can. Mayo has such a good reputation for research on Pots, I'm probably better off waiting, huh?
  7. Wow, it is amazing reading this. I am going through exactly the same thing. I haven't been to this forum in years because the doctors changed my diagnosis in 2006 from POTS to Bartter's Syndrome. They said it was a mild case. They kept me on the Florinef and prescribed prescription Potassium. I felt better for a long time. A couple months ago I started feeling bad again. Went back to my nephrologist I see for Bartter's and he ran a whole bunch of tests. He said it is not Bartter's(low potassium)because my K+ is never low despite being on Florinef, which lowers potassium. He thinks it
  8. Melissa, I will be thinking of you. Get well soon! Hopefully, it's just a flu bug and you'll be home soon! Wishing you well, Karen
  9. I know there were other posts about this topic but I just thought it was interesting to see that pop up today on the front page of Yahoo! Wow! Very sad for Greg, but on the up side this could really help raise awareness! If his symptoms are bad enough for him to have to quit, then maybe others can see what we are going through. My hubby says that now when people ask what is "wrong with me" he can say she has what Greg from the Wiggles has. I guess this will help with our doctors too. Not so easy for them to brush us off as if their is no such thing as POTS. : Karen
  10. Funny, I was thinking of asking this very same question. I moved from the Mississippi to Wisconsin and love it! I was so miserable in the heat and humidity. I feel much better now that it is cooler. Not too sure how I'll feel when it is frigid out though. It has been amazingly mild so far! Karen
  11. Thank you all for your responses. Went to the nephrologist today and mentioned it to him. He said it looks like Raynaud's Phenom. Just another thing to add to the list. Happy Thanksgiving! Karen
  12. After a panel of endocrin docs at an university medical school looked at my records, they thought it wasn't an endocrin problem. They suspected I have Bartters Syndrome and referred me to a nephrologist. This disease is extremely rare so I doubt I have this. They thought this because I have high aldosterone but not high blood pressure. Also, lots of back pain on the right side near kidneys. Just wondering if anyone knows of this disease or had a doctor mention it as a possible explanation for POTS symptoms. Just another thing to rule out I guess. Karen
  13. I went to put on my compression stockings this morning and the bottom of my feet were purple. Scary!! I was cold but, still.... I know you have problems regulating your body temp with POTS, but that seems weird. Not to mention, I forgot about the farrier coming even though I wrote it down. He was not happy with me after driving 39 miles! I was sound asleep and didn't even hear the dogs barking. Why do I have this annoying memory loss? Will never fully understand this POTS thing. Karen
  14. I was a stay at home mom for 12 years and thought since my kids were getting older I might get a part-time job. I had to quit after less than a yr in March 06 because of POTS symptoms. That is when my crusade began to figure out what was wrong with me. Now that I know I have POTS, I think the way the doctors treat the disease(not taking it seriously)makes me feel like I SHOULD be able to work. We really need the money and despite the fact that I was only making $7.50/hr, it was a little extra. Funny, though after not working for so many years I was real tentative about whether I wanted a
  15. Wow, this forum is amazing! That is exactly what I have been wondering lately. Are my symptoms from POTS or is it the MVP? I was diagnosed with MVP with mild regurgitation on an echo by a cardio. I asked him directly, "Could the MVP be causing the dizziness, fainting,etc. ?" He said no. That is a separate problem. But, since being on the meds Florinef and Toprol XL, I feel more like its the heart more than POTS. I really don't feel like passing out anymore, mainly short of breath if I lift something or climb stairs. My chest tightens up at night(right about this time 8-9pm) when it tim
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