Jump to content

Recommended Posts

Great Article. I hope he does out grow it.

It doesn't surprise me about the misread on the tilt table test.

I think doctors need to look at ALL tests results.

Sometimes people are nervous when doing the TTT, and it could mess the numbers up-----giving a false negative.

Even though my TT was negative, Dr. Grubb diagnosed the POTS based on my history, and other testing.

I was lucky to have him near by, and I ended up with an appt. based on one of my many ER visits to the hospital he works at.

A smart doctor finally figured something other then indigestion might be wrong. :)

My heart rate did go up, but more slowly because I was on my beta blockers. I refused to go off meds because I was so weak, an felt so sick I didn't think my body could handle it. The Cardiac nurse and doctor doing the test said I could do it on my beta blockers. My BPs get very low, as doctors have witnessed on many future office visits.

Maxine :0)

Link to post
Share on other sites
This is a good article. Shocking that he was misdiagnosed by a physician who mis-read a tilt table test result.

Yeah, wonder WHERE that first TTT was done? What a shame that Adam lives so near Hopkins and had to go all of the way to Mayo...

I LOVE the Mother's comment- "Trust your child. Trust your gut." That's the best advice, but so hard to follow when ALL of the experts are telling you that nothing is wrong with your child, or even worse, that your child has "emotional" problems. I ultimately fought like Mama Bear for my son when he was sick. With his dramatic weight loss, I felt like I was fighting for his very life.

Great that our disease is getting attention!!!

Julie

Link to post
Share on other sites

Yes I loved that comment too about trusting.

It was a neurologist who ordered the test, the article says. You'd think if the neuro knew enough to suspect POTS, he or she would know the diagnostic criteria for POTS. Apparently b/c the young man's bp didn't change on the tilt table test, the neuro concluded the patient did not have POTS.

Link to post
Share on other sites

Thanks for sharing the article. I too found it very interesting. My tilt table was read negative by the first dr for same reason, no change much in bp, but I pushed for another dr to look at it based on the almost doubling of my heart rate, that along with my symptoms confirmed positive TT. I did not notice it of course in myself, but my family noticed how forgetful I was in the beginning. It has improved thank goodness. It was great that POTS made the news, and the Washington Post at that! Also encouraging for that family that so many teens recover.

Link to post
Share on other sites

I had the same thing happened to me, the big wig doctor said I didn't have pots because my bp didn't change despite a 50 point rise in hear beats. I wonder if he saw the same guy I did. Dr. Abdallah is a wonderful doctor and I highly recommend him. He is in Northern Virginia and is listed in the physicians list for Virginia.

Link to post
Share on other sites

Hi All~

Okay, I'm very confused. My specialist at the Mayo Clinic in Rochester told me that I did NOT have POTS because my BP dropped so much on standing. My HR went up about 60 points, but he told me that the Mayo definition of POTS is that usually your BP will not change very much when you stand. The definitive issue is that your HR goes up 30 points or more. Otherwise, you have a different kind of dysautonomia, like NMH or orthostatic hypotension, to name a few.

I should have looked again, but I thought that fit pretty well with the definition of POTS on our homepage, too. So confusing....

Link to post
Share on other sites

I am SO happy to see POTS mentioned in a major newspaper. I loved the article, though I wish they hadn't focused on migraines and memory loss, because there are so many other symptoms! Let's hope for more publicity in 2010.

Potsgirl, different doctors have different opinions as to the difference between POTS/NCS/OH - glad you got a diagnoisis, though! It's so frustrating that docs STILL misread TTTs clearly indicating dysautonomia and tell people they are nomal.

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...