My Medical Tests
Personal Experience: Medical Tests- What's worked, and what hasn't.
In summary, each EDS or rare patient requires specific care. One must be proactive in finding what works for them, and what does not. Not everything on this list has been helpful, for me, but I keep trying to find the best answers that will help. I invite you to learn from my experiences.
•2001, Upper GI revealed acid reflux.
•August 2005, tests for Thyroid Hormone levels (TSH, FT3, and FT4) showed some hypothyroidism. Began taking Armour thyroid 20 mg. Fibromyalgia was diagnosed by symptomology. Also tried several different supplements that were meant to help Fibromyalgia. I noticed no significant difference in pain levels or energy production from taking hundreds of dollars worth of suggested supplements.
•February 2009, HIDA scan revealed the gall bladder no longer worked. The surgeon was also concerned with the amount of stomach issues and my younger age. He sent me for more tests to see if an upper GI surgery would be an option for me.
Those tests were: •Esophageal Manometry, BRAVO probe placement and interpretation, Upper Endoscopy which revealed hiatal hernia, gastritis, and duodenitis. There weren't enough complications to perform upper GI surgery. I only had a cholecystectomy.
•August 2009, Tonsillectomy due to chronic issues and bacterial deposits. My tonsils were very permeable and full of junk!
•November 2009, Took a second round of carafate to treat duodenal ulcers.
•December 2009, Left lobe and isthmus of thyroid was removed due to a cyst caused by a birth defect, which kept growing and restricting airways.
•March 2010, I began Chiropractic care and continued for two years. At first it seemed to help, but eventually, noticed no great help from this. Upon discovering the EDS, I discontinued, as it is not recommended without a Chiropractor who is familiar with EDS. Ligaments, especially in the neck, can be stretched and not return to normal.
•November 2010, began walking with a subtle limp in both legs. By Christmas time, it was distinctly obvious, and very difficult to walk. The bottoms of my legs began to turn to rubber- they curved outward from the foot up the calves, giving me a very wide stance.
•December 2010, Brain MRI- unremarkable, possible mild sinus disease.
•December 2010, added Tramadol to my daily routine: 50mg- 100 mg up to 4X daily. Helped, at first. Progressively stopped helping manage pain after a few months.
•February 2011, I began using an electric wheelchair to get around at work, and a wheeled walker to get around everywhere else.
•March 2011, Nerve Conduction Study, EMG testing of the right upper and lower extremeties revealed no definite abnormalities.
•March 2011, MRI Thoracic Spine and Cervical Spine revealed minor bulges.
•May 2011, TSH test showed progressed hypothyroidism. Vitamin B12, Homocysteine Plasma, and Methylmalonic Acid showed normal results.
•May 2011, more of the same blood tests: Aldolase, CBC-PLT panel, Creatine Kinase, CMP panel, Vitamin D, C-Reactive Protein, TSH showed normal results.
•May 2011, STIR MRI of left thigh revealed no abnormalities.
•June 2011, Psychiatric Evaluation ruled out conversion disorder.
•I had to find a doctor who would continue to look into my new normal. My own doctor would no longer send me to any specialists. Luckily, my step mom knew of a Rheumatologist who would take a chance on me, despite not having a referral.
•August 2011, MORE of the same blood tests, plus some new: Scl 70 Ab IgG, Phospholipid AB IgG and IgM, Cryoglobulin, Beta 2 panel, Centromere antibodies, Lupus anticoagulant, Hepatitis, Hepatitis C, Protein Electro. Serum and Random, Parathyroid Hormone, Rheumatoid Factor, ESR, Tissue Transglut, Proteinase 3 AB, Cyclic Citrullinated Peptide, Myositis AB 2 panel, Antinuclear AB w/RFLX Titer, Urinalysis Comp w/ Rflx Culture. These tests did not reveal anything helpful.
•August 2011, XRay Bilateral Hips, normal
•August 2011, Whole Body Bone Imaging, normal
•August 2011, CT Chest, unremarkable
•October 2011, Gastric Emptying test showed Delayed gastric emptying.
•December 2011, acupuncture visit (with a Dr.) reveals low blood volume (Hypovolemia).
•December 2011, another psychiatric evaluation to rule out conversion disorder and neurology visit which found nothing new - it's STILL not in my head.
•December 2011, Motion Analysis Test showed abnormalities which lead to seeking Genetic Counseling.
•December 2011, Allergy testing revealed very little trouble with seasonal allergies. I take Claritin and Fluticasone daily to help with skin itchiness, sinus and ear irritation, and symptoms that seem to be allergy related yet unexplained by test results. Urticaria under warm water was diagnosed via symptoms.
•January 2012, Anorectal Manometry and Anal EMG showed Abnormalities and inhibitory reflex. Colon Transit test showed prolonged colon transit time. Removal of the colon was advised.
•January 2012, MORE blood tests- repeated, nothing new found.
•February 2012, Pelvic Floor Physical Therapy, did not reveal anything new, but confirmed pelvic floor dysfunction.
•April 2012, Thermoregulatory Sweat Test showed autonomic neuropathy in the feet and hands.
•April 2012, Autonomic Reflex Screen (tilt table) showed mild abnormalities (POTS).
•April 2012, Genetic Counseling revealed Ehlers-Danlos syndrome, hypermobile type. Also, dx of ligamentous laxity, myofascial pain secondary to EDS, and Neuropathy were made official.
•June-July 2012, Mayo Comprehensive Pain rehabilitation center- Four week pain rehab- Some things worked very well for my pain issues, some things exacerbated the issues. I weaned off of the Tramadol for the pain clinic, and have not taken it since.
•August 2015, Blood tests show vitamin D deficiency, again. I was prescribed 50,000 units of vitamin D to take once a week for two months, which is normal, but my body reacted badly. I now take 4000mg daily.
•October 2015, Mammogram and ultrasound reveal fibrocystic breasts.
•May 2016, Thoracic, Lumbar, Sacrum MRIs, Cervical Flexion CTs, and Cervical Upright Weight-Bearing MRIs prescribed by Dr. Fraser Henderson, pre-appointment. Cervical Flexion Impression: 1. Mild grade 1 subluxations of C2 on C3 and C4 on C5 on flexion views. This reduces on neutral and extension views. 2. Mild hyperkyphotic angulation on the flexion views of C5-6 and C6-7 levels. This reduces on neutral and extension views. 3. No Chiari Malformation identified. 4. Right paracentral disc herniation at C5-6 level. No stenosis. 5. Small disc bulges at the C4-5 and C6-7 levels. No stenosis. 6. Overall straightening of the normal cervical lordosis. Dr Henderson also notes ligamentous stretching. Weight bearing MRI Impression: 1. Abnormal clinal axial angle. 2. Total rotation of 61 degrees to the right and 63 degrees to the left. 3. Right rotation of 40 degrees at C1-2 is abnormal. 4. Total rotation of 43 degrees at C1-2 to left is abnormal. 5. Anterolisthesis and angulation in flexion as described. Correlation with examination in extension needed to better evaluate total extent of motion/ instability. Dr Henderson also notes some muscle spasm in the neck. (Dx Craniocervical Instability (CCI) and Occult Tethered Cord)
•May 25, 2016, Mast Cell Activation Syndrome and POTS symptoms confirmed by Dr Francomano. Given prescription for Cromolyn Sodium with Low Histamine Diet. Given orders for PT, Sleep Study, Echocardiogram, Urodynamic Study, and hormone tests.
•May 26, 2016, Dr Fraser Henderson found possible Occult Spina Bifida on the lumbar MRI, 90% sure of tethered cord syndrome, moderate cervical degeneration due to trauma and cranio-cervical instability, and prescribed meds for constipation and muscle spasms, and neck PT. I have a cervical collar for days when the instability keeps my head from holding itself up. Surgery for tethered cord could improve the muscle control throughout the legs greatly. I might look into cervical surgery to replace the discs and repair the instabilities later on.
•June 2016, Echocardiogram showed Mitral Valve Prolapse and enlarged Left ventricle - common with EDS. The cardiologist described it as mild, and will keep an eye on it.
•July and September 2016, Sleep studies show that a c-pap machine or oral appliance would help sleep quality, due to RERAs (respiratory effort related arousals) and mild obstructive sleep apnea. Apneas and hypopneas are relatively low, and not a concern. There is no snoring involved. UPDATE: I have an oral appliance and I do get more restorative sleep.
•October and November 2016, Occupational Therapy visits bring ring splints to the thumb and first two digits of my right hand. We'll see how those work out and look into the left hand, also. UPDATE: The silver ring splints are too heavy for my fingers and cause more nerve pain- all the way to my shoulder.
•November 2016, ordered and fit Bauerfeind compression stockings, ankle, knee, shoulder, and SI joint braces. They are better support and quality than online ordered braces that need replacement regularly and wear out quickly.
•November 2016, I had a stroke, and went through many tests to determine cause or damage, but nothing new was found. I now have regular checkups with a neurologist. They recommended a loop recorder, which I have implanted in my chest. It was removed April 22, 2021 after the battery life had expired, and it was determined I no longer need to monitor heart rate.
•December 2016, Port Placement - I have regular Saline IVs to keep the hypovolemia (POTS) and all of its issues at bay, and to keep my congenitally hypoplastic veins in my brain filled and running smoothly (stroke prevention).
•October 2017, Podiatrist recommends AFOs for bilateral foot drop, and bilateral Morton's Neuroma. Unfortunately, my leg muscle weakness prevents me from wearing them- my foot being lifted causes too much strain which results in a great amount of pain.
•December 2017, Neurogenic Bladder tests are positive- this means I do have a tethered cord. Dr Henderson recommends surgery, but the cost is very high. Dr Francomano recommends seeing Dr Petra Klinge in Rhode Island.
•November 13, 2018, Cervical, Thoracic, Lumbar MRIs pre-appointment for Dr Klinge. Cervical Impression- 1. Central disc extrusion with upward migration at C5-6 with central disc protrusions at C4-5 and C6-7 do not result in significant spinal canal or neural foraminal stenosis. Thoracic Impression- 1. Mild degenerative disc disease involving T6-7, T7-8, and T8-9. No central or foraminal stenosis. Lumbar Impression- 1. Left paracentral disc protrusion at L5-S1. There is mild compression of the left S1 nerve root. Correlate clinically with symptoms. 2. No central canal stenosis.
•February 2019, Dr Petra Klinge has agreed with the test results and diagnosis of Tethered Cord syndrome, and is willing to do the surgery.
•March 19, 2019, pre-op cervical Xray- degenerative spondylosis C5-6 and C6-7
•March 25, 2019, Dr Klinge completed the Tethered Cord Release surgery (Laminectomy) and found a rogue nerve that was going into my spinal cord that she couldn't find a connection to, so they cut it and hope I'll have success in regaining muscle strength in my legs, or at the very least that I won't continue to lose function over time. They also hope my GI, bladder and bowel issues will get better or at least not progressively worsen over time.
•December 13, 2019, Post-Op Visit with Dr Klinge. No major changes to report. Most likely, diagnosis took too long from onset of symptoms-too much neurological damage to make major improvements. Should stop disease progression, though.
•February 25, 2020, Post-Op Lumbar MRI Impression- 1. Mild multilevel degenerative changes which are relatively stable. 2. Stable small disc protrusion at L5-S1. 3. Interval laminectomy changes at L3. 4. No spinal canal stenosis.
•July 14, 2021, Echocardiogram - normal with exception of prolapse of the anterior and posterior mitral valve leaflets.
•July 21, 2021, CT Angiogram - results are normal CTA of the thoracic and abdominal aorta, including its branches. Yearly CT Angiogram will commence from here on out.
•February 11, 2019 marked the last good TSH result for me at 1.31. Based on test results from March 22, 2019 (2.14) until August 25, 2021 (1.35) my TSH levels were too high for me, based largely on symptomology- although a lot of that time it remained near the high normal level (3.75), and took many increases in medicine doses to get levels to lower into the 1-1.9 range, where my body prefers to be.
•September 1, 2021, SIBO test - results are negative.
•October 14, 2021, due to progressing GI issues, endoscopy and colonoscopy are ordered. Colonoscopy is unremarkable, except for diverticulitis in the Transverse Colon. No findings of inflammation means that addressing the Mast Cell issues have been extremely beneficial. Now, to figure out what's causing so much trouble in there.
•December 27, 2021, Ultrasound and Xray of the abdomen showed moderate stool retention and a echogenic lesion on my liver.
•January 7, 2022, CT Abdomen with contrast showed the liver lesion is suggestive of a possible hepatic hemangioma but cannot be definitively characterized. Follow-up in a year. Also, Moderate fecal burden, even after a 24-hour Miralax cleanse prior to the test.
​•Dec. 16, 2022, Echocardiogram - The patient is stable from a cardiac standpoint. Her echocardiogram remains essentially unchanged. Check in two years.
•Jan. 7, 2023, Abdomen CT- 1. Stable hemangioma right hemiliver. 2. Bilateral low-density breast lesions.
•Apr. 4, 2023, CT- 7 mm wide neck mid splenic artery aneurysm. 6 cm left lower lobe pulmonary cyst.
•May 30, 2023, Gastric Emptying Study - At 1 hour 53 % of ingested material is removed from the stomach. At 2 hours 96 %. At 3 hours 98 %. The gastric emptying T 1/2 is 77 minutes. Normal is between 40 and 120 minutes.
•Feb. 2024, Central Lymphatic Dysfunction- noted by OT upon using Manual Lymph Drainage
•Apr. 2, 2024, Rheumatology- SI Joint XRays confirm osteoarthritis
•Apr. 8, 2024, CT- 7 mm wide neck mid splenic artery aneurysm. 6 mm enhancing hepatic segment six lesion is stable and likely represent a small flash filling hemangioma. Previously seen small left lower lobe cyst is again noted.