Ctat333 Posted February 18, 2014 Report Share Posted February 18, 2014 Hey everyone,It's been a while since I posted. Life and flares have gotten in the way :/ I have finally got insurance, and will be seeing Dr. Suleman at The Heartbeat Clinic in Dallas on March 11th. I have absolutely no idea what to expect! I plan on bringing a list of symptoms, and my medical records from my cardiologist and EP. Is there anything else I need to bring with me? Any words of wisdom or advice that can be offered to me about 1st appointments and what to say or ask? I am so excited to finally be able to start my journey to official diagnosis. I am not excited to be chronically ill and to feel horrible all the time, but at least I have a chance to finally get some help now. That gives me so much hope.I will keep everyone posted. Thank you for all your support! The times that I have been on here I have received nothing but amazing advice and unwavering support....DINET is amazing Quote Link to comment Share on other sites More sharing options...
ophelialit Posted February 18, 2014 Report Share Posted February 18, 2014 Hi there! It's definitely a small world as I, too, JUST made my first appt. for Monday with Dr. Suleman here in Dallas (well, the McKinney office to be exact). As you can see from my signature, I've been diagnosed with a little bit of everything, but I've been experiencing increased palpitations in the past few months--likely due to the stress of relocating (I moved here from DC in July) and other, various life bits--and I thought it would be a good idea to get established with a cardio group here. I'll be happy to pop back up after my appt. so I can give you a rundown of my experience and what you can expect...good luck to us both! Quote Link to comment Share on other sites More sharing options...
Ctat333 Posted February 18, 2014 Author Report Share Posted February 18, 2014 It IS a small world! How nice that we will have appointments so close to each other. Comparing notes could help us both! I will be seen at the Denton location. I technically don't have a diagnosis of anything POTS related just yet, lol. Looking back, I have been symptomatic since childhood, but symptoms for me didn't start to become severe until about 6 years ago. I have been uninsured for the last 7 years, as I was denied due to my heart problems. I do have SVT, and had an ablation almost 3 years ago right after the birth of my youngest. Since I have been uninsured, it's been difficult for me to see anyone so I have been treating myself and researching for quite some time haha! I am super excited to finally be able to see a specialist. Fingers crossed for both of us that we can get some answers!Please update me after your appt and let me know how everything went! Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 18, 2014 Report Share Posted February 18, 2014 Good luck on your visits. Just be sure to write down all questions and symptoms. Bring copies any past medical test that you think might be helpful.Take fluids and salty snacks. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 18, 2014 Report Share Posted February 18, 2014 You will get a thorough work up with him. He's the ONLY cardiologist that did a test where they inject you with nuclear stuff and then get under some machine that shows the heart's uptake of it. I don't remember the name of it. He also was the only one to use ultrasound to look at the vessels in the head(lower back of head and temple area of front). Ultimately I couldn't handle the beta blocker he put me on, so I didn't get much results, but I had a lot of testing. Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted February 19, 2014 Report Share Posted February 19, 2014 I'm so glad you will be able to see a specialist now! Hopefully you will get your diagnosis soon and be able to work out things that will help you. Just remember to write a list of symptoms and a list of questions that you want to ask. If it's likely to be a long appointment I try not to wear warm clothing as the heat in hospitals can make me so dizzy. Quote Link to comment Share on other sites More sharing options...
griffism Posted February 21, 2014 Report Share Posted February 21, 2014 I have been seeing Dr. Suleman for a little over two months now, and the results are amazing!! I have been out of the hospital for about three months now, which for me is really great because before that I was on a pattern of one admission a month that usually lasted about four days. With regard to the first appointment, you will, first, have to fill out a huge form about all your medical information. Then, you will be taken to a back room for vitals and an EKG. After that, you will be taken to a patient room, where you will be seen by Dr. Suleman. Dr. Suleman will ask you to tell your story about how your illness started and so forth, as well as what your current diagnoses are if you have any. Then, he will do a thorough examination, including the Beighton scale if he suspects EDS (Ehlers-Danlos Syndrome). After the examination and discussion of the situation, he will decide what series of tests that he will run on you depending on what he suspects is the problem. For me, I had three full days of testing, including a tilt-table test, a test to determine if you have a hole in your heart, two balance tests, a pain test, a sweat test (Q-Sweat), an Echocardiogram and other sonograms of your legs and neck, as well as a stress-echo, and maybe a couple more that I can't remember right now. Once these are completed, you will come back for a follow-up to discuss the results, and then you will probably go for blood work (16 tubes the first time!) Right now I see Dr. Suleman every two to four weeks for close monitoring. I am so glad that you found Dr. Suleman! He has changed my quality of life more than I could have ever dreamed of! Hope this helps Stefanie Quote Link to comment Share on other sites More sharing options...
gackedo Posted February 21, 2014 Report Share Posted February 21, 2014 I have been seeing Dr Suleman for the last 8 years and he has made a huge difference in my life. He is a really kind man and really is concerned for his patients. Quote Link to comment Share on other sites More sharing options...
Ctat333 Posted February 24, 2014 Author Report Share Posted February 24, 2014 Thank you everyone! Stefanie, that was such helpful information, thank you! When I spoke with the receptionist while making my appt, she asked about my symptoms. After giving her the rundown, she told me that Dr. Suleman would probably want to run a whole bunch of different tests, since I have many different body systems affected. I am anticipating a few days of testing as well lol! 16 tubes of blood sounds insane....was that all at one time, or over the course of a few days?I am so hoping that he can help me get some part of my life back. I can't even bathe my self every day at times. I don't get hungry and I might eat once a day. I can't play with kids or take them outside. I can't get basic chores done around my house on a regular basis. If Dr. Suleman can help me get to a place where I can get these few things back, then I would be thrilled. I don't need to be "cured." I just want to have some basic sense of independence back! Quote Link to comment Share on other sites More sharing options...
IceLizard Posted February 24, 2014 Report Share Posted February 24, 2014 Hi everyone. I am considering seeing Dr. Suleman, too. Like most people on here, I have already seen many physicians and tried different medications. I have the fear that I will be put through a lot of expensive tests and then be told that there is no therapy that I haven't already tried, that we know what is going on in more detail, but there is nothing we can do about it. It sounds like that has not been the experience of those who have seen him, though, thank goodness.For those who have seen him: How did the tests he ran help determine what course of action to take? What medicines really helped in the end? How was seeing him different from the others doctors you had seen? Quote Link to comment Share on other sites More sharing options...
roxie Posted March 5, 2014 Report Share Posted March 5, 2014 Dr S is my dr too. He does a ton of tests, you will feel overwhelmed, but you will learn a lot.Icelizard, I think you should see him. I will be completely honest with you, I am a patient that confuses him, he tries everything he knows and I still don't get the results of other patients he has. Its a little frustrating but let me tell you, HE KEEPS TRYING! He keeps thinking and he keeps looking, I see it on his face at my appointments. He wants to find the cause and what helps up and he is supportive of me on looking to some other specialists that might help in areas he's not as experienced with. Right now, I'm waiting to see Dr Henderson (and EDS neurosurgeon in Maryland) he's very interested in see what happens there. Not only for me but how he can watch screen other patients for things. Plus, he has more than a few tricks up his sleeve and it constantly looking to learn! Quote Link to comment Share on other sites More sharing options...
griffism Posted March 7, 2014 Report Share Posted March 7, 2014 Ctat333,Yah, the 16 tubes was all at one time, but after that I got fluids, which is a potsie dream lol. For anyone else considering seeing Dr. Suleman, I would definitely recommend it!! I have gone from not being able to get out of bed to back in school (almost full time-11 hrs) working towards my biology/pre-med undergraduate degree! Although my life is not like it was, I would be content if it did not get any worse than it is now! As far as meds is concerned, every person is truly individual with what works for them. For me, the two most helpful things have been propranolol (a beta blocker for my non-restorative sleep disorder) and midodrine (vasoconstrictor for my BP and HR). However, I still struggle with EDS pain and gastroparesis issues. I am hopeful that I will get a handle on some of the other issues that I have in the near future! If you have anymore questions about Dr. Suleman, let me know! Hope this helps Stefanie Quote Link to comment Share on other sites More sharing options...
Anoj Posted January 30, 2016 Report Share Posted January 30, 2016 Can I ask how much this costs for so much testing, even with insurance? I have insurance, but this sounds like it could go into the thousands. PM me if you'd like. Thanks! Quote Link to comment Share on other sites More sharing options...
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