Vandy

[smarti54]

I was diagnosed with hyper Pots in May, but have known for years that I had adrenalin surges. I have even joked for years that I had a pheochromocytoma. Last July I developed urosepsis (due to MDS...a blood cancer) and my pots went hay wire. I was turned down by Mayos autonomic clinic. I go to Vandy the fist week of November. Do I need to get copies of all my TTT, holter, etc sent to them? They have me scheduled to see Dr Muldowney with a plasma volume study and Autonomic function test. Any info you can provide would be great.

[SarahA33]

Hi Smarti,

As a general rule, keeping your records accessible is a really good idea. Things get lost, misplaced, etc. Especially at such a big appointment you've got coming up I would recommend having all of your records. I would have them faxed and then bring along your copies.

Im sorry you've been through such a hard time. I've been in your shoes, too, this past year Ive had some lab abnormalities that have sent me to hematologists who have screened for a blood disorder called Myoproliferative. Ive tested negative for all the genetic mutations so far, thank goodness, but I see still see my hematologist every 4 weeks for further testing. I also have the hyperadrenenrgic component. I totally get how it feels to be turned upside down. When you were diagnosed with, myeldylsplactic (sorry about spelling) syndrome, did you have a shortage of red blood cells, wbc's and platelets? I remember reading about this a while back, we are opposite if that's the case - I have high levels of those.

Anyway, best of luck to you at your appointment coming up. I hope that they can help!

Sarah

[smarti54]

With Myelodysplastic syndrome... My platelets, RBCs and WBCs are low. I have frequent infection and bleeding. With myeloproliferative disorders there is an excess of cells types. They are very similar and are both bone marrow disorders. The anemia does not help with tachycardia and the shortness of breath for me. Thanks for your input.