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Posted: 13 March 2014 03:30 AM   [ Ignore ]  
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Hello everyone,
I am just looking for some advice on what medical tests I should have done and what sort of doctor(s) I should be seeing at this point. I am at a loss on how I should cope and what I should be doing to improve my health. First, here is a bit of my medical history:

Since I was a little girl, I dealt with fainting episodes. My episodes ceased at the age of thirteen and my health seemed fairly “normal” at that time, despite being diagnosed with exercise induced asthma and OCD/anxiety/depression related issues. By age fifteen, I contracted Mononucleosis. Since then, I have been dealing with extreme fatigue. I always seemed to have a hard time concentrating and was diagnosed with Dyscalculia, or numerical dyslexia. At age seventeen, I had my first tachycardia episode, with a heart rate exceeding 200bpm. At the time, I thought I had simply had a panic attack. Since the incident, I have been fighting an uphill battle with my health. I had several more heart episodes that sent me over 170bpm and put me in the hospital. I was quickly unable to move or get out of bed due to severe tachycardia. I had countless EKGs, an echocardiogram, saw multiple cardiologists, yet my heart was perfectly healthy. The doctors concluded that I had anxiety and gave me Xanax. This helped what felt like intense adrenaline rushes, but my tachycardia remained. I never felt nervous before having these episodes, so I couldn’t understand the anxiety diagnoses. During these episodes, I would turn a strange orange color, my heart would race, and I would shake all over my body. Getting flat on my back and putting ice on my forehead helped the episodes. Eventually I was diagnosed with Postural Orthostatic Tachycardia and put on Florinef as well as a beta blocker, Atenolol. I spent three months on bed rest and a few more in a wheel chair. After a three year POTS nightmare, I was finally able to manage my episodes with Atenolol and have not had any major heart issues since. 

At age nineteen, I learned about Ehlers-Danlos and noticed that I had several of the symptoms.
I had always been hypermobile, had easy bruising, etc. I have officially been diagnosed with Ehlers Danlos, type III.


Although my POTS episodes are under control, I still deal with an accelerated pulse. I have learned to just deal with it, but at times it does get fairly uncomfortable.

At age twenty, I became pregnant with my first child. The pregnancy ended in miscarriage and I discovered that I have Uterus Didelphys, meaning I have two sets of internal reproductive organs. That same year, I began having what seemed to be severe UTI’s, but the tests would consistently come back negative. I was then diagnosed with Interstitial Cystitis.

All in all, I have been diagnosed with POTS, Ehlers-Danlos type III, Interstitial Cystitis, Uterus Didelphys, and asthma. I also have Keratosis Pilaris. 


Now, here I am at age 21. My current issues are battling Interstitial Cystitis and severe fatigue. I am seemingly unable to do anything because of it. I am tired all day and cannot sleep at night, yet no matter how much sleep I get, I am still always tired. I always have this general feeling of being “unwell”. I get cold very easily, have itchy skin that sometimes breaks out in a few hives or small rashes that go away quickly (I have been tested for Mast Cell issues, the tests came back negative), I notice small red dots on my skin sometimes that are very far apart, I have frequent ganglion cysts in my hands, frequent twitching and spasms around my eyes, and my heart is always too quick (although much, much better than in the past). I have very severe PMS symptoms and painful menstruation/ heavy bleeding, my hair and nails seem brittle to me as if they are thinning, I have frequent pain under the left side of my rib cage (spleen? I have had my gallbladder looked at with an ultrasound and all appeared normal), and frequently swollen lymph nodes (I have been tested for lymphoma in the past and tests came back negative). I just don’t know what to do at this point. The fatigue and general “bleh” feeling is interfering with my life drastically and causing much depression. I eat a fairly healthy diet (although not perfect) and take a multivitamin. Are there any dietary suggestions any of you have found to be successful? Helpful vitamins or supplements? Any alternative or conventional treatments that have helped you feel better? Any more tests I could take that could help me better understand what is going on? I am suspicious of thyroid and hormonal issues, as well as Chronic Fatigue Syndrome. I had a thyroid test done last year and my numbers were slightly off but the doctor said it was “nothing to worry about” which I do not understand, because I feel quite bad. I have never had a hormonal panel. What I have had are countless CBC’s, testing for Lyme’s Disease, EKG’s, echocardiogram, holter moniters, thyroid tests (with varying results), testing for mast cell issues, among many other tests I cannot remember off the top of my head. I am not currently seeing any doctor as there are not any in my area who have been able to help me or who specialize in any of my issues that are not pediatricians.

Thank you for reading my long post! I appreciate any insight.

Best wishes to all.

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Posted: 17 March 2014 06:43 PM   [ Ignore ]   [ # 1 ]  
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I agree that you should find a good endocrinologist. In addition to rechecking the thyroid levels, I would definitely have him check your adrenal function. In Hyperadrenergic POTS, adrenaline production is always on…so in between episodes the adrenal gland experiences fatigue because your body lives in a constant state of overstimulation. I would also request him to order a supine and standing norepinephrine test…if your norep increases dramatically from lying to standing then a diagnosis of Hyperadrenergic POTS can be made. We are currently scheduled to see my daughter’s endocrinologist…because it is my hope that she can address the adrenaline surges by suppression medication that will address the adrenaline production which should help all of my daughter’s issues and not just the elevated heart rate. We are also going to have her rule out pheochromocytoma/paraganglioma (type of tumor that secretes catecholamines) because Hyperadrenergic POTS can mimic such a tumor. The symptoms are very similar, because they both oversecrete adrenaline, but they have different causes. If you have Ehlers Danlos as your primary disease then your adrenaline secretion is most likely due to Hyperadrenergic POTS and not a tumor. But I think its worth ruling out.

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