Julie’s Symptoms

and

Diagnoses

Julie’s Diagnoses

Each of Julie’s diagnoses comes with its own list of symptoms. EDS is the underlying cause of her most debilitating diagnoses:

Craniocervical Instability (CCI)

Atlantoaxial Instability (AAI)

Atlantoaxial Subluxation (AAS)

Tethered Cord Syndrome (TCS)

Ehlers Danlos Syndrome (EDS)

Postural Orthostatic Tachicardia Syndrome

Mast Cell Activation Syndrome

A Simple and Concise Explanation of the Instabilities Caused by EDS can be Seen Here.

In the past, the conditions which Julie was diagnosed with evolved from being the complete diagnosis to being the symptoms of a more extensive and, for 40 years, elusive condition.

Simply put, Ehlers Danlos Syndrome (EDS) causes, in Julie’s case, the ligaments holding bones to each other to be too weak to hold them in the correct place. This causes Craniocervical Instability (CCI), Atlantoaxial Instability (AAI), Atlantoaxial Subluxation (AAS), and Tethered Cord Syndrome (TCS).


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Other Diagnoses

Postural Orthostatic Tachicardia Syndrome (POTS)

Restless Leg Syndrome

Brainstem Compression/ Medullary Syndrome

Premature Disc Degeneration

Temporomandibular Joint Dysfunction Syndrome

Osteophytes inside spinal cord space

Spinal Stenosis

Sacroiliac Joint Dysfunction (SJD)

Segmental Instability

Intracranial Hypertension

Irritable Bowel Syndrome

Delayed Gastric Emptying

Hiatus Hernia

Complex Endometrial Hyperplasia

Retroverted Uterus

Vestibular Dysfunction

Attention Deficit Hyperactive Disorder (ADHD)

Dermographia

Mast Cell Activation Disorder (MCAS)

Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/ CFS)



Some Words of Advice for ME/CFS Patients

Myalgic Encephalomyelitis or Chronic Fatigue Syndrome is an horrific and debilitating condition. As a couple of cases have been reported in the media over recent years where a patient has seemingly recovered from ME/CFS, many sufferers of this illness have sought surgery for a similar result. Sadly, there are overlaps in symptoms between ME/CFS and EDS, CCI, AAI, and AAS. The chance of someone with ME/CFS having CCI, AAI, and/or AAS is quite remote. This can cause extreme distress to those who are desperate for treatment and an escape from their suffering. There are several very promising research projects currently investigating ME/CFS. May they find answers and treatments very soon. Stanford University in the USA is advancing and leading in research and knowledge. It has treatment and research trials which are available only to residents of the USA. Link is HERE.

Although Julie was previously diagnosed with ME/CFS, this has now been replaced with her EDS, CCI, AAI, AAS, and Tethered Cord Syndrome diagnoses. Please read the very, very informative article by Jeff Wood, one of those stories of an apparent ‘cure’ HERE or in the link below. He describes why you need to be prepared that the stories you may have read are, sadly, misleading and giving false hope to millions.

Please be aware that doctors exist who are taking advantage of this situation right across the world. Some specialists raising their fees drastically (300% in one case shortly after reports began of ‘cures’) and also the number of consultations required solely for patients who are trying to discover if they have CCI, AAI, and/or AAS. Some of these doctors are neither qualified nor experienced to carry out surgeries. Julie came close to succumbing to these inflated fees and inexperienced greedy doctors as she was desperate to end her suffering. This behaviour is completely legal under the regulation of medical specialists both in Australia and in many other countries.

Click on the above image to read Jeff  Wood’s editorial on why he seemingly recovered from what was thought to be a severe case of ME/CFS

Click on the above image to read Jeff Wood’s editorial on why he seemingly recovered from what was thought to be a severe case of ME/CFS


 

Julie’s skull just a fraction of a millimetre away from dislocating

Overwhelming, Painful, and Debilitating

As you will see, the sheer number, unusual, and changing symptoms experienced by Julie contributed to the very long and difficult path to a diagnosis.

The list of symptoms below is not an exaggeration. These symptoms are real in number and type, they are debilitating and painful. Occasionally Julie becomes aware of a new symptom when she discovers that something her body does or something she experiences is not something which everyone experiences as a normal phenomena.

Julie’s Symptoms

 

  • Neck pain

  • Joint pain

  • Spinal pain

  • Muscle pain

  • Migraine headache

  • Occipital headache

  • Temporal headache

  • Severe foot pain

  • Severe leg pain

  • Severe depression

  • Severe anxiety

  • ADHD - attention deficit hyperactivity disorder

  • POTS - postural orthostatic tachicardia syndrome

  • PTSD - Post Traumatic Stress Disorder from medical mistreatment and neglect

  • Frequent Joint dislocation and subluxation

  • Hiatus hernia

  • Osteophytes

  • Spinal stenosis

  • Gastrointestinal problems such as IBS - irritable bowel syndrome, and gastroesophageal reflux disease Chronic fatigue syndrome

  • Fluctuating blood pressure

  • Restless leg syndrome

  • Dental issues

  • TMJ dysfunction including subluxation - temporomandibular joint

  • TMJ pain

  • Raynauds syndrome

  • Dermographia

  • Mast Cell Activation Disorder

  • Intermittent food and drug sensitivities

  • Gastric reflux

  • Limb paralysis

  • Eustachian tube dysfunction

  • Head feels too heavy to hold up

  • Debilitating fatigue

  • Insomnia

  • Hypersomnia

  • Severe eczema

  • Inability to concentrate

  • Cognition issues

  • Memory issues

  • Brain fog

  • Blurred vision

  • Ciliary muscle dysfunction

  • Dermographia

  • Low levels in blood of: iron, vitamin D, Vitamin B, Zinc, magnesium

  • High level of copper

  • Spontaneous vomiting

  • Muscle cramps

  • Nocturia and frequency

  • Complex endometrial hyperplasia

  • Menorrhagia

  • Crunching noises and sensation in neck

  • Liquid moving sounds in upper neck/ spine

  • Neck hypermobility

  • Tinnitus

  • Vestibular dysfunction

  • Poor balance

  • Pain and pressure behind eyes

  • Digestion problems

  • Mitochondrial issues

  • Sensitive to light

  • Sensitive to scent

  • Sensitive to sound

  • Altered taste sensation

  • Poor decision making

  • Altered heat perception

  • Clicking joints

  • Very narrow blood vessels so difficult to cannulate

  • Breathing stops on occasion

  • Itching sensation across the body

  • Frequent mouth ulcers

  • Painful chewing

  • Episodal partial or complete blindness in left eye


Julie’s symptoms are comprised of constant and intermittent ailments. The symptoms present at any time depend on which part of the brainstem and spinal cord are being impacted by the surrounding, moving bones. This long list is no exaggeration. It’s easy to see why doctors were so challenged to find a diagnosis.

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  • Fragile skin easily broken, cut, and torn

  • Burning sensation inside spine

  • Severe lower back pain

  • Pins and needles and other parasthesias (strange sensations) right across body

  • Pins and needles in tongue

  • Slow healing of wounds

  • Air hunger

  • Muscle spasms

  • Heart palpitations

  • Permanently swollen submandibular glands (under bottom jaw)

  • Chronically itchy scalp with pins and needles

  • Gait abnormalities

  • Right downbeat nystygmus (uncontrolled eye movements)

  • Lateral nystagmus at close focal length

  • Panic attacks

  • Leaky gut syndrome

  • Hoarse voice and loss of voice

  • Choking

  • Fluid retention

  • Severe abdominal pain

  • Bowel and intestinal issues

  • Hair loss

  • Eyebrow thinning

  • Skin rashes and keratosis pilaris (bumpy ‘chicken’ skin)

  • Frequent tonsil stones

  • Bulging discs in spine

  • Easily fatigued with extended recovery time of days or weeks

  • Intracranial pressure changes

  • Collapse when ears syringed

  • Loss of heat sensation over parts of spine

  • Mandibular Tori - bony overgrowth on inside lower jaw

  • Estrogen dominant

  • Retroflexed uterus

  • Miscarriage

  • Nosebleeds

  • Severe fatigue after most activities such as reading, writing, talking, and other cognitive rich and emotional activities

  • Nerve pain

  • Severe nausea

  • Facial parasthesias

  • Difficulty finding/ thinking of words

  • Speech difficulties

  • Numbness in extremities, limbs, and lips

  • Erratic body temperature

  • Poor proprioception - the brain’s awareness of the location of parts of the body to the body as a whole

  • Double vision

  • Swallowing difficulties

  • Feeling of impingement or pressing on the back of the oesophagus

  • Loud clicking, pain, and subluxation in thoracic and lumbar spine

  • Vertigo

  • Overproduction of saliva

  • Clumsy

  • Severe weakness in muscles

  • Tremors

  • Motor signal issues. Muscles don’t perform the action message sent from the brain.

  • Edema

  • Easily bruised and injured skin

  • Unstable gait/ walking difficulties

  • Loss of voice

  • Speech problems

  • Partial vision loss (intermittent)

  • Vascular issues in blood vessels of the head and neck

  • Extremely easy to bruise

  • Pseudotumours in feet

  • Hypersomnia and insomnia