Diagnosis: undiagnosed-with multiple diagnosis including dysautonomia….
Hello, my name is Michael. I am 13 years old. I have dysautonomia, POTS (Postural Orthostatic Tachycardic Syndrome), MCAD (Mast Cell Activation Disease), apnea (central, obstructive, and mixed), bradycardia, tachycardia, hypoxia, Hypoperfusion of the trunk, Hypermobility, VCD (Vocal Cord Dysfunction), Asthma, Allergies to: Latex, Rubber, Nickel, Adhesives, and Formaldehyde, POTS headaches, tension headaches, cervicogenic headaches, low volume headaches (from leaking CFS causing low volume but normal CFS pressure), classical migraines, abdominal migraines, and ocular migraines, and GERD (Gastro Esophageal Reflux Disease). I also have dizziness, head fog, muscle weakness, and many more symptoms to be diagnosed. I am from the USA.
I have had many tests such as the tilt table test, tilt table test with labs, MRIs, MRIs with contrast, X-rays, lots of labs, stress tests, week long hospitalizations, psychiatric workups, EEG, CAT scan, medication trials, holter monitors, and spinal taps. I need full genome sequencing, and some other tests.
I take three asthma inhalers, atrovent, ventolin, and flovent. I also take singular, zyrtec, magnesium, malloxicam, miralax, cranberry, vitamin C, multivitamin, cromolyn sodium, corlanor ivabradine, axid, cyproheptadine, famotidine, fexofenadine, prevacid, immitrex, Midodrine, and others. I also have oxygen, CPAP, apnea/heart rate/oximiter monitor, FL-41 tint glasses, IV infusions, compression stockings, and physical therapy for hypermobility. I also have to drink lots of liquid, exercise often, and eat lots of healthy foods.
I am very well educated, although the school district can be a pain to go through. They have occasionally given 504 aids that just abandon me when I can have a problem any minute without warning. Other than that, I am very educated and I excel in my classes. I have only gotten 4.0 GPAs in schooling.
Occasionally the doctors don’t believe what I am saying, so they sign it off as being psychotic. Sometimes the insurance does not cover what they would say they would cover. That leads to long arguments between the insurance company and my parents, and although my parents are right, the insurance does not like to budge.
I am socially attuned. I have many friends, and they are not my friends because I am “gimpy”. They are my friends because I am their friend and they do not feel sorry for me. I wish that people would see that under the oxygen and the monitor is a very intelligent person who knows what they are talking about. I hope that they would not be afraid to talk to rare and undiagnosed kids, and that they would treat them like regular kids as much as they could.
I like school. I like math, reading, science, my percussion class, my theater class, and dance class. I like to play with Legos. I like to play soccer, on a recreational team, and I am the keeper (goalie). I also like volley ball, swimming, and archery. I love brain teasers and to think through problems. When I am older, I want to become a Geneticist.
This is my little sister who was able to take a few photos with me.
Isabelle, Michael’s sister, is also undiagnosed-with multiple diagnosis. The doctors say that their genetics and condition(s) are beyond them.