Guest Hanice Posted August 1, 2013 Report Share Posted August 1, 2013 I know that some of us are in Miami, I just want to send out an alert! There IS a doctor here that KNOWS what he's doing! He ordered a bunch of awesome tests! A ttt (that I will be doing in the hospital with him)Plasma MetanephrinesThyroid Function ProfileCT abdominal/pelvisI finally feel like I'm not forgotten or uncared for. I am so impressed with his knowledge. His name is Dr. Martel Jose, this is all his infoDr. Jose A. Martel, MD1 (305) 412-83159200 Sunset Dr #4, Miami, FL 33173http://goo.gl/maps/IIjtT This is the first doctor I truely respect (other than my awesome OB/GYN) He knew what POTS was. And I asked him about my brain mri and he told me he wasn't sure but that it looked ok to him. He even knows what Chiaris are! Wow wow wow. Cant wait to see him again. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 1, 2013 Report Share Posted August 1, 2013 Sounds good Hanice.Nothing like an appointment with a dr that "gets it" right?Looks like he is evaluating you for a phaeochromocytoma and for thyroid problems - I think most of us have gone through this. Actually the plasma metanephrines is THE test to have for a phaeo - it's said to be superior (more sensitive as well as more specific) to the plasma catecholamines I mentioned in my other posts and to the 24 h urine test you mentioned you already had. If you don't mind sharing, what's the reason you(he) suspect(s) a phaeo? Is your BP fluctuating a lot throughout the day? Either way, I'm happy for you. Hopefully these tests will bring you some much needed answers and a valid treatment plan.Best of luck and keep us posted.Alex Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted August 1, 2013 Report Share Posted August 1, 2013 Because while standing my blood pressure is unstable it goes down and way up. I actually didnt even suggest it but he said he wants to rule it out. Do you have any idea how many doctors I have practically begged for an abdominal/pelvic ct or mri Alex?! I have almost cried asking different doctors telling them how much I wanted it. I know its not cool but I even lied to my endo telling her that my dad had a pheo and I think that this might be causing all my pots symptoms (I was so desperate) and she plainly said NO. As I said, I didnt even suggest the tests, he told me that he wasn't even sure if the insurance was gonna let him do it because (im guessing) its not technically a cardiac test.Thanks for reassuring me about the Metanephrines, I wasn't sure that that would be sufficient without the catecholamines. The only way I could possibly be happier is if he also did a brain scan but thats just too neuro. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 1, 2013 Report Share Posted August 1, 2013 I hear you Hanice,dysautonomia is one complicated, challenging condition to live with and even the best drs have a hard time figuring out how to best address our needs.I sure hope that once you get all those test results back you will get some answers and some much needed peace of mind. (On a side note - the percentage of hereditary pheos is relatively low: 25% or less so I kind of see why your endo might have said no; plus from my experience most drs don't exactly like to be told what to do or what tests to order but that's in the past now).Given your increase in BP when you stand I'd actually think that you might get more answers if your awesome new dr orders the standing catecholamines blood test to decide whether you're dealing with hyperPOTS. That test may actually be part of the TTT - it was in my case, but different drs follow different protocols for the tilt test. You may want to suggest that to him if he's the open minded type. I'll post a link to an article that may help you persuade him. It explains the clinical presentation and the diagnosing criteria for hyperPOTS and it's co-authored by dr Grubb, one of the most respected and knowledgeable POTS specialists. To access the entire article just click on the white/blue rectangle in the right upper corner of the screen where it says "full text available at..."http://www.ncbi.nlm.nih.gov/pubmed/21947988With your brain MRI, can you possibly get another neuro to take another look at it - perhaps one experienced in Chiari?Best,Alex Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted August 1, 2013 Report Share Posted August 1, 2013 I hear you Hanice,dysautonomia is one complicated, challenging condition to live with and even the best drs have a hard time figuring out how to best address our needs.I sure hope that once you get all those test results back you will get some answers and some much needed peace of mind. (On a side note - the percentage of hereditary pheos is relatively low: 25% or less so I kind of see why your endo might have said no; plus from my experience most drs don't exactly like to be told what to do or what tests to order but that's in the past now).Given your increase in BP when you stand I'd actually think that you might get more answers if your awesome new dr orders the standing catecholamines blood test to decide whether you're dealing with hyperPOTS. That test may actually be part of the TTT - it was in my case, but different drs follow different protocols for the tilt test. You may want to suggest that to him if he's the open minded type. I'll post a link to an article that may help you persuade him. It explains the clinical presentation and the diagnosing criteria for hyperPOTS and it's co-authored by dr Grubb, one of the most respected and knowledgeable POTS specialists. To access the entire article just click on the white/blue rectangle in the right upper corner of the screen where it says "full text available at..."http://www.ncbi.nlm.nih.gov/pubmed/21947988With your brain MRI, can you possibly get another neuro to take another look at it - perhaps one experienced in Chiari?Best,AlexThank you Alex, you are so sweet ♡♥ is there any reason why you suggest another neuro goes over my results? Do you think it looks funky too? Thank you so much for the suggestion of a standing blood Metanephrines test. I will definitely ask him if he would do that! And I will read the link now.. Thank you for all your help Alex, it's always appreciated. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted August 1, 2013 Report Share Posted August 1, 2013 He also wants to do a stress test. Im scared about it a little. I think maybe he'll do it after the ttt. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 1, 2013 Report Share Posted August 1, 2013 The only reason I suggested to get a second neuro opinion was for your own peace of mind, nothing else. I don't know much about Chiari or I would have commented on your MRI post but a second dr might help put your mind at ease.The stress test is actually easy - you just walk on a treadmill at variable speeds and angles until you decide you can't take it anymore. Meanwhile they monitor your HR and BP. You can stop at any time, but the longer you go the more info they can collect. I had 4 or 5 of them and my dr has usually scheduled them before the TTTs, but I don't think there is any rule about that. The thing is, I'd take a stress test over a TTT any time now. Best,Alex Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted August 1, 2013 Report Share Posted August 1, 2013 Really? Oh my goodness Im scared of passing out :-( Last time I felt like I might faint I was walking so I'm nervous about both. I've done one stress in the past over a year ago and it was normal, but now my symptoms have gotten so bad that I cant even go anywhere. Have you gotten a proper diagnosis? Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted October 3, 2013 Report Share Posted October 3, 2013 Just to get it clear with the future people that read this. The doctor wasn't very helpful in the end. I fired him before I could even take all the tests. Quote Link to comment Share on other sites More sharing options...
looneymom Posted October 3, 2013 Report Share Posted October 3, 2013 HaniceDid you get to take a ttt? If not, you need to get this done.Rachel Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted October 3, 2013 Report Share Posted October 3, 2013 RachelHe diagnosed me with pots and I KNOW I have. Why is the ttt so important? Quote Link to comment Share on other sites More sharing options...
looneymom Posted October 3, 2013 Report Share Posted October 3, 2013 HanceA tilt table test can tell the doctor several different things about the type of POTS that you have. For instance, does your blood pressure run high or low when you are in an upright position? There other test that can be done on a ttt to pick up on the diagnosis of hyperpots. It really is the gold standard for diagnosing POTS. It would be better to have this done before your condition gets worse and what if this is something else besides POTS that could be cured. I think you would give anything to have a normal life back. If it were me, I would not take the word of a doctor for a diagnosis of POTS. When my son went down on us, the doctors were saying it's just in your son's head. After the results were positive, it was easier to deal with doctors that knew something about POTS. Rachel Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted October 3, 2013 Report Share Posted October 3, 2013 I just made an appointment with Dr. Efrain Salgado in Weston which is only half an hour away from miami. He Is in the Florida Cleveland Clinic with another neuro called Dr. SALANGA. They told me they are very knowledgeable in the pots dept. I'm hoping to get better results from them. Quote Link to comment Share on other sites More sharing options...
looneymom Posted October 3, 2013 Report Share Posted October 3, 2013 Good for you Hance! Hopefully this appointment will go much better for you.Rachel Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted October 4, 2013 Report Share Posted October 4, 2013 Thank you Rachel! I really hope so too. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.