Summary of Diagnoses
This is a summary of the diagnoses that I currently have. Each zebra has its own pattern just as each EDS patient has its own set of diagnoses and treatments that help them. If anything resonates with you, be sure to research and talk to your doctor. Hopefully together, we can find our most ideal means for surviving and thriving.
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Primary Care CHI/ IM Mayo Clinic/ IM Think
Ligamentous Laxity
Hypertonic Muscles
Myofascial Pain secondary to EDS & Chronic Pain Syndrome
Gait Disorder
Fibromyalgia
Central Lymphatic Dysfunction
Peripheral Neuropathy
Tinnitus
Hypovolemia
Depression
Frequent Headaches
Chronic fatigue
Hypothyroid
Low vitamin D
Low potassium
Low B-12
LDL high normal range - need to keep lower due to stroke
Left pelvic phleboliths
Genetics, (EDS specialty)
Ehlers-Danlos Syndrome, hypermobility type (defective collagen)
Beighton Score: 9/9
Dysautonomia/POTS symptoms
Mast Cell Activation Disorder (Cromolyn Sodium and Low-Histamine Diet helps)
Flushing Urticaria Dermatographia
High-arched palate, teeth crowding
Grey Sclerae
Proprioception Impairment (Romberg present)
Piezogenic Papules on heels
Ankle Pronation
Straightening of Cervical Lordosis and Thoracic Kyphosis
Lower Thoracic Lordosis
Rheumatology
Osteoarthritis – SI Joint, etc.
Neurology
Ischemic Stroke/Aphasia (11/07/16)
Congenitally Hypoplastic P1 segment on the right, the left posterior communicating artery is markedly hypoplastic, head CT
Neurosurgery
Cranio-Cervical Instability (moderate degeneration of C-2 thru C-7, possibly C-1)
Tethered Cord Syndrome (Fibrolipoma of filum terminale)
Degenerative spondylosis at C5-6 and C6-7
Dystonia
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Cardiology
Mitral Valve Prolapse, stable
Mild left ventricular hypertrophy
Podiatry
Flat feet, fallen arches, bilateral
Morton’s Neuroma, bilateral
Drop Foot, bilateral
Sleep Specialty
Obstructive Sleep Apnea (mild)
Sleep disturbance (RERAs/hypopneas)
Gastroenterology
GERD
Hiatal hernia
Gastritis
Duodenitis
Gastroparesis
Prolonged Colon Transit
Chronic constipation/ diarrhea
Pelvic Floor Dysfunction
Incontinence
Moderate Fecal Burden, colon
Hepatic Hemangioma .6 cm - stable
Splenic Artery Aneurism 7mm
Left lower lobe Pulmonary Cyst 6 cm
Gynecology
Fibrocystic breasts, bilateral
Excessive blood flow/cramping with menstruation- resolved (ablation)
Tilted Uterus
Urology
Chronic UTI’s
Incontinence and Stress Incontinence
Neurogenic Bladder
Dermatology
Eczema
Intertrigo
Tinea veriscolor
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Physical Therapy
Neuromuscular Fatigue
Loss of Motor Control in Hips, bilateral
Surgeries/ Procedures:
Cholecystectomy (2/09)
Tonsillectomy (8/09)
Left Lobe and L side Isthmus Thyroid removed (12/09) Uterine Ablation and Salpingectomy (9/2/16)
IV Port, Left side (12/16)
Cardiac Loop recorder, Left side (7/17, removed 4/21)
Breast Cysts drained, bilateral (22cc liquid in 11 cysts) (9/17)
Tethered Cord Release- Lumbar laminectomy (L2-L3 laminotomy) for detethering of filum terminale, also Peripheral nerve altered cord into the filum (3/26/19)
IV Port Right side, L side removed (9/22)
S.I. Joint Nerve Block- cortisone injections (4/16/24)