A Compilation of my ongoing;
Diagnosis, Treatments, Medications, Oils, Alternative Therapies, Diets and more
Last Name:
Gorson
First Name:
Hillary
DOB: 10/03/1992
Height: 6’4”
Weight: 198
Diagnoses
Ehlers-Danlos
Syndrome (EDS) (classical &/or hypermobile)(Awaiting WES results/ 6 months)
Marfans’
Syndrome / Marfanoid Habatius
Postural
Orthostatic Tachycardia Syndrome (POTS) / Dysautonomia
Mast
Cell Activation Syndrome (MCAS/MCAD)
Neuropathic
Pain (Left Extremity, Scalp and Facial/Neck Region)
Occipital
Neuralgia (ON)
Cranio
Cervical Instability (CCI)
Tethered
Cord Syndrome (Occulta/ OTC)
Mid
to Lower Cervical Instability (T9/10 Herniated Disc)
Atlanto-axial
Instability (AAI)
Cranio
Facial Pain Syndrome
C3-4 Instability
C5-6 Spondylolisthesis
C7 Leftward over
rotation
Cervical Medullary
Syndrome
Small Syrinx in
Low Cervical Spine
Mild
Scoliosis
Degenerative
Disc Disease (DDD)
Migraines
Bladder
Sphincter Dysynergia (BSD)
Gastroparesis
(GP) / Slow Motility
Polycystic Ovarian
Syndrome (PCOS)
Complex
Regional Pain Syndrome (CRPS)
Fibromyalgia
(FMS)
Chronic
Fatigue Syndrome (CFS)
Post Traumatic
Stress Disorder (PTSD)
Depression
Anxiety
Neurological
Dysphasia & Aspiration (Phantom Pill) (several studies show minor
impairment)
Peroneus
longus tendon tear left ankle / multiple joint and Ligament subluxatoins. Very weak.
Seberhettic
Dermatitis & Perioral Dermatitis & Contact Dermitits
Severe
L. Shoulder Instability and Spasms / Moderate Osteoarthritis
L
Shoulder AC joint Degenerative Joint Disease
Medications:
Low Dose
Naltrexone (LDN) 4.5mg (Nov 2014) DR.
CHOPRA
Cetirizine HCL -10
mg - 2x a day (Zyrtec) Liquid Children’s Allergy Relief (Nov 2014) DR. CHOPRA
Ranitidine
- 150mg -2x a day (Zantac) (Nov 2014) DR. CHOPRA
Cromyln Sodium - 10ml/
1 oz water - 4x daily (July 9th, 2015) DR. CHOPRA
Tamsulosin - .4mg -
am daily (off /on Nov ‘14/Full time June ’15) DR. MURDOCK
Linzess – 145mg -
am daily (Aug 8th, 2015) DR. JACOBSON
Propranolol - 10mg
(as needed) (Feb 2015) (needed
more in summer)
Volteran Gel - 2-4grams
topically (as needed) (March 2014)
Vitamins &
Supplements:
Liquid
Vitamin D3- 2500 IU (cholecalciferol)
Liquid Sublingual
B12-Complex - 4,000mcg
Ibergast
– 20 drops as needed 1-3x daily with or before meals (started 12/11/14)
Ginger
tincture (~1,200mg) –as needed 1-3x daily with or after meals
Quercertin
500mg 2x daily between meals / after Cromylm Sodium
100%
Fractionally Distilled Aloe Juice 1 oz daily am & pm
Oil
of Oregano 30mg daily am
White Willow
Tincture (as needed)
Skullcap Tincture (as
needed)
Valarian Tincture
(as needed)
Nettle Tincture
(as needed)
Medical
Cannabis Oils (internal & external) (2-6x daily)
Topical Only
Oils:
Warming Arnica Oil,
Argon, Almond, Apricot, Avocado, Castor, Emu, Coconut and Cannabis infused
Olive Oil Blends with Essential Oils; Lavender, Rosemary, Clove, Birch, Oregano,
German Chamomile, Rose, Rose Hip Seed, Neroli, Tee Tree, Lavendar Eucalyptus,
Eucalyptus, Carrot, Geranium, Frankincense, Myrrh and More. (all of the above
or at least the first five always)
Trauma Drops
Tincture (Calendula Flower, St. Johns Wort Flwg Tops, Arnica Flower)
Willow Minor Pain
Response Tincture (Jamacian Dogwood Rt Bk, St Johns Wort flr & bud,
Meadowsweet lf & flr, Willow bark)
California Poppy
Tincture
Liquid
Magnesium Concentrate, Magnesium chloride- 80 MG (Eidon ionic Minerals)
Allergies/Intolerances
Benadryl –“Pixel Vision”,
Hallucinations, disorientation, extreme fear, fits
Adhesive/ Tapes- Bumps, Rash,
Cold/burning.
Metforman/
Glocophqage
– Temperature regulation problems, did not work.
Yaz/ Yazmine/
Ocella
– Severe Abdominal Pain “rats tearing stomach apart for 9 months”
Oxycodone –Increase
Migraine/ Pressure headache, abdominal pain and did nothing to help pain
Hydrocodone – Nausea, did nothing,
stomach pain
Cortef – Night terrors
and frequent urination at night
Latex- Burning/ Rash
Possibly
Baclofen, Propolis, Xylitol and Sugar, and mints (spearmint/ peppermint)
Food Allergies/
Intolerances/ Sensitivities
Gluten
& Off Grains since summer’13,
Gluten ‘12. Causes severe nausea & inflammation
Dairy,
Eggs & Soy – GI Symptoms Improved/
Nausea as well
Oysters
– avoiding over a year
Pineapple-
off of since Jan ‘14 – Causes extreme itching if in large quantities same with
other high histamine foods
Brewer
Yeast- avoid
All
the above were diagnosed via blood test by US biotek as medium to high
intolerances in 2008
Nightshades
- Bee like buzzing sensation in legs,
overall unwell feeling
Sucralose
– Stomach Pain increased to not tolerating solid foods while on it.
Sugar
– Stomach Pain increased with any form of sugar, artificial or in fruit.
Past
Surgical History
Tonsillectomy
(2005)
Adenoidectomy (2003 failed) (2004 Successful)
Left
compound tibia/fibular fracture 1M Tibia
Rodding & 3 screws. Post MVA ( May
2006).
Laparoscopy
with distal right salpingectomy and excision of a benign 5.5-cm multicystic
right paratubal cyst (August 2008).
Colonoscopy,
with a polypectomy (Jan 2009)
Ingrown
Toe Nail Removal with Staph Infection (June 2011)
Nose
Scope – Providence Hospital ER (Feb 2015)
Endoscopy
with clear biopsy- (March 2015)
2
Ingrown Toe Nails Removed (May 2015)
Sebaceous
Cyst Drained (June 9, 2015)
Hospital
Admittance & Dates
MVA
Compound Fracture Tibia/Fibia & three broken toes May 26, 2006 (3 days)
Past
trauma/injury history:
Spring 2004- Tumbled head over heals down a flight of stairs (14 steps) Banister fell ontop of me, left arm in sling for about a week
May
26, 2006 - MVA Compound Fracture Tibia/Fibia & three broken toes (3 days)
September
2006 - Fender bender car accident, whip lash like scenario
Winter 2008- Slipped on Black ice fell on low back and backpack saved head from hitting pavement.
August
2009 -Thrown out of ride along wagon and landed on back and smacked head on
pavement. Head and neck issues worsened.
Jan
2010 - fell from Handicap Shower seat that ripped out of shower wall as I went
to sit on it at a Hotel in Oakland, whacked head on wall and landed on my low
back with one leg under my bottom and, could not move well for weeks and had
severe back pain ever since.
Dec
2010 - Hit by another vehicle, fender bender, anther whip lash scenario (side
to side).
Nov
2011 - Jaw locked severe for over a month, Medical withdraw from University
(4.0 GPA)
April
2013 - rapid EDS Decline. Everything moving and causing neurologic symptoms.
Had to leave my last job and applied for disability. Left shoulder and ribcage
collapsing in on itself and no one addresses the issues there.
Imaging
Studies (with dates):
Abdomen Xray - 5/23/06
Pelvic ultrasound - 4/26/07
Chest Xray - 12/02/08
Abdomen Xray - 12/2/08
Abdomen & Pelvis CT - 12/8/08
Pelvic Ultrasound - 12/19/08
Small Bowel Series - 1/26/09
Lumbar Spine Xray - 2/3/10
Knee MRI – 9/24/10
Pelvic Ultrasound - 8/9/11
Pelvic Ultrasound - 11/29/11
SI Joint Xray - Jan 2, 2014
Wrist & Hand Xray Jan 2, 2014
Flex/ Ext Cervical Xray - Feb 4, 2014
Brain & Cervical MRI - March 8, 2014
Shoulder Xray - April 21, 2014
Rotational Cervical CT- April 24, 2014
Shoulder & Chest Xray - April 25,
2014
Thoracic MRI – May 16, 2014
Lumbar MRI - May 19, 2014
Cervical MRI - August 18, 2014
Upright Flex & Ext Cervical MRI - Oct 24, 2014
(Maryland, Washington Open MRI)
Hips & Pelvis Xray - Nov 22, 2014
L. Ankle Xray 12/8/14
L. Shoulder CT -- 2/11/15
L. Ankle MRI 2/24/15
Ultrasound L. Shoulder –- 6/30/15
Pelvic MRI – 8/03/15
Upright Lumbar MRI Flex & Ext w/ Sacrum –
8/25/15 (Maryland, Washington Open MRI)Lots of problems secondary to EDS (lists above and below)
Depression
Dislocating/ Mostly Partially Dislocating ALL my joints
& discs (Subluxing)
Especially my fingers, wrists and small hand joints
Hips, Knees, Tibia, Elbows and Shoulders
Ankles and Toes
Spontaneous Ligament Tears
Falling Arches/ Flat Feet
Floating Knee Caps
Knee Valgus
Neck and Back vertebra as previously stated above
Temperomandubilar Joint Disorder (TMJD/TMJ)/ Snapping & Lock Jaw
Difficulty Chewing, Swallowing & Speaking
Difficulty Typeing, Writing, Reaching & Holding things
Difficulty walking, standing, getting up, sitting down, poor balance
Brian Fog/ thinking clearly / maintaining thought process
Migraines/ Headaches
SEVERE DEBILITAING PAIN
Fragile Skin (Easy Bruising, Easy Scarring, Stretchy Skin)
Slow Wound Healing
Keliod Scars
Highly Sensitive / Hypersensitive / Allergies (all systems)
IBS/ IBD / GERD / Debilitating
Nausea
Spontaneous CSF Leaks
Spinal Cord Abnormalities / Scoliosis / Degenerative Disc Disease
Tingling in Arms and Legs / Neuropathy
Osteoathritis / Degenerative Joint Disease in Left shoulder - CRPS
/ Allodia / EXTREMLY LOOSE AND HANGING
LEFT SHOULDER and whole arm DO NOT TOUCH, always needs to be supported.
And other Co-Morbid Conditions like POTS/ MCAS/ OTC/ GP and more
Conventional Therapies & Tools:
Exercise: ( have not been able to do any consistent exercise since
novemeber ’14)
Warm Water Physical Therapy (with a knowledgable PT about once every 1-
6 months)
Stationary Exercise Bike (as able)
Yoga Ball Sit (as able)
Put joints back into place (several times an hour)
Lie on floor to put things back about 1ce a week
Mobilty Equptiment:
Cane (use always outside home, in and out of car)
Walker (in case of emergency)
Crutches (can’t use)
Wheelchair (Electric) (in home use only)
Wheelchair (Manual) (needs to be pushed anywhere outside home)
Bracing: (ordered by specialists)
Aspen Vista Ridgid Cervicle Collar
Oval 8’s, Murphy Splints & Silver Ring Splints (all finger joints)
Metacarpal Splint
Bregg Shoulder Abduction Pillow (Left Shoudler)
UCB Shoe Orthotic (L & R)
Bledsoe Custom Knee Orthotics (L & R)
FabriFoam straps to hold various joints in place
Custom Sole Supports (older)
Elbow Strap (older, can’t use)
Order for R. Elbow Brace in the Works
Order for L. Ankle Brace in the Works
Alternative Therapies & Tools:
Distraction Therapy / TV Show Addict
Music Therapy/ Binaural Beats
Mindfulness/Meditation/ Relaxation
Magnet/ Biomagnetic Feedback
CFT- Cranial Facial Therapy
Support Groups Online & In person (when physically capable, arms functioning well)
Connecting with other Spoonies through Social Media
Traction Device (over the door & inflatable)
PILLOWS (bone neck pillows, J pillow, U Pillow, Knee Pillow, Lumbar
& Sacral Support Pillows etc)
6” raised Toliet Seat with Saftey Rails
Hip Chair Shower Seat (29” seat to floor height) (on order)
TENS/IF/MICRO/EMS Unit
Hot Showers (when able)
Yoga Toes (Toe Stretchers)
Cylindrical Foam (on utensils, pens, pencils, toothbrush etc)
Body Buddy (can’t use often)
Back Arch Stretcher (can’t use often)
Back Foam Roller (can’t use)
Compression Stockings (can’t wear at all)
Compression Socks (can’t wear much)
Platapus Gravity Water Dispenser (can’t hold normal water bottles)
Eliminated All Food Allergies-(Gluten, Dairy, Eggs, Soy, Pinapple &
Oyster)
Also Nightshades (all of the above off since June 2012)
All GRAINS (off since June 2013)
Sugar and Starchy Veggies (off since June 2013)
No Heated Olive Oil – Only Coconut Oil for everything
GAPS/ PALEO Modified Style Diet (Began June 2013 and I continue to adapt
and change still very limited)
High Sodium Diet (Natural Salt Only) Since December 2014
Foods High in Magnesium & Potassium
Electroyle Replenishment (coconut water/ Nuun) (December 2013)
Eating Anti-Inflamatory Foods
Avoiding Inflamatory Foods
Drinking ALOE JUICE (11.3.14)
Introducing lots of Fresh GINGER
(11.5.14) Shredded and in Tea (GAPS) & Powdered
Liquid Diet (2.20.15)
Puree Diet (3.15.15)
Combo /Puree Diet very limited to Ground Buffalo Meat, Fish, Sweet
Potato, Shredded Zuchinni, occasional Poultry all organic grass fed, ground
pureed and then mashed together, 1 cup at a time ½cup protein ½ cup veggie. Slowly introducing more
greens. (6.15.15)
Linzess seems to be
working, not using ibergast as much eating solid foods more (late Aug 2015)
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