My symptoms


Everything starts – August 2010

Lidocaine and Dexamethasone injections into cervical spine

Right after: dizziness, high heart rate, near fainting and bowel problems

2 days later symptoms got worse (2010):

The first 6 weeks I had the following symptoms:

Blood pressure 150/80 (usually: 100/60 mmHg)

Heart rate > 140 beats/min.

Breathing stopped, mainly at night which caused an autonomous awakening reflex

Burning and hot neck up to my head, with cold hands, feet and chills

Dizziness / blurred vision / unsteadiness / tingling in hands and heels
Feeling of getting a flu

Fatigue

Numb tongue and lips

Headache

Weakness in both legs

Circulatory problems

Trembling all over the body

Throbbing in the back

Uneasiness, as if I was nervous

Swallowing problems

Frequent urination

Motoric problems

Trouble with hearing like if I had cotton wool in my ears

A feeling as if I would faint every second
Swollen lymph nodes in my neck

Stopped to take the birth control pill: connective tissue got worse.

 

Approx. 8 weeks after infiltration and now permanently:
Almost every day dizziness

Amblyopia / visual disturbances of the left eye

Burning in the neck especially after exercises, usually when someone attempts to eliminate muscle spasm of my shoulders
After thoracic chiropractic it has cracked really hard on the right side between spine and shoulder. Since then I have pain and a clicking of the rib to the sternum and between the clavicula and sternum, hypermobility of the shoulder-arm joint (instability)

Night blindness

Over time, the cracking has increased in the cervical spine

Cold sweating

Rapid hypoglycemia

My left eyelid hangs and the eye is smaller

Various food intolerances (coffee, gluten, egg, alcohol)

Concentration problems, memory problems, spelling and word finding disorder

Muscular weakness in left hand and both legs and neck
Worsening during menstruation or infections

Bradypnea, chest breathing difficult

Increased leg reflexes, decreased reflexes of the left arm

Movement of the eyes or tongue lead to the massive deterioration of symptoms

 

2013:

Fast progressing of symptoms and instabilities
Hematoma on the legs without getting hurt (it takes very long for them to disappear)

Legs deform

Hypermobility cervical spine till mid thoracic spine and sacroiliac joints, hips, shoulders
Massive deterioration after infection
Involuntary shaking of the cervical spine
Strong trouble with breathing and breath holding
Pain iliosacral joint till legs, burning sensations
Constant feeling of being ill
Can hardly hold my head upright
Feel like I would break apart in the lumbar spine
Connective tissue problems, like stretchable skin and everything “hangs”
Right shoulder is deeper since chiropractic, also there appeared a scoliosis more and more
Foot lifter weakness
Swollen node on the right side under my skull
More and more muscle reduction and weakness in spite of daily training
Neuropathy hands and feet

 

2014/2015:

Shivering
After 5 minutes of standing: heavy legs, dizziness, low blood pressure but high heart rate
After eating: nausea, dizziness, brain fog, hot flushes, and strong pulsation of my belly, cold sweating and shivering, diarrhea (not all the time, there are better and worse periods)
Needle pin pain of bladder, neurogenic bladder
Strengthless in my whole back, struggling to hold my body upright while sitting or standing
After coffee very tired and low blood pressure
Head is shifting to the front and the back on my spine
After sleeping, I am totally exhausted, getting more AND MORE TIRED
More and more problems with my legs and feet:

After sitting for a long time my feet become numb and I feel like I would break apart in my lower spine
Increased pain and cramps in calfs after walking for 1 km, with ice cold legs up till knees and paresthesia. Takes a long time to recover.
Thermosensibility decreased in hands and feet

More bladder issues: Feel like my bladder is never really empty, urinary urgency

Severe gastrointestinal problems with extreme nausea, weakness, shivering, freezing and constantly after eating diarrhea with massive weakness and extreme urinary urgency.
Huge numb areas in my neck (around C3-7 on both sides)

 

2016

Acute worsening of symptoms (bad flu and started a new exercise protocol):

Both arms numb

Visual disturbances, hearing problems

Balance problems

Feeling like every joint would be inflamed -> physical therapist tried to manipulate my c-spine

which led to:

Horrible burning of my neck

Pressure around my jaw and over my face, behind my eyes

Bad vegetative symptoms with tachycardia, cold hands and feet, red and hot cheeks but white surrounded eyes, shivering, breathing issues, extreme fatigue, nausea

Visual disturbances (blurred vision, seeing stars)

Dizziness

Weakness

Balance troubles (cannot stand on my feet)

Cannot hold my head upright

Numb tongue, numb throat (hoarseness, trouble swallowing)

Numbness of my hands (usually pinky and ring finger, but also thumb and 2nd finger and sometimes even all of them)

Every kind of activity of my arms, shoulders or neck is not possible (no backpack, no physical therapy)

Severe worsening of dysautonomia symptoms after viral infection: without compression tights it is not possible for me to stand more than 5 minutes; bad flushing of my face happens all the time, and an exhaustion I cannot even describe.

If I am walking for about 30 minutes without neck brace I am getting severe needle pin headaches starting somewhere in my mid or lower c-spine.

Resting tremor of both hands with weakness of both arms, and bad pain on the lower side of the upper arm along the tendon.

After any stress to my cervical spine: persistent hick-ups which only go away when wearing neck brace.

 

Diagnoses:

Hypermobile Ehlers-Danlos syndrome

Hashimoto’s thyroiditis

Slight mitral valve regurgitation
Allergies; intolerances to various foods, contrast dye, lidocaine and cortisone
Idiopathic rel. lymphocytosis with neutropenia, permanently irritated lymphocytes in the blood

Mast Cell Activation Syndrome (MCAS)
Cranio-cervical instability with mitochondrial cytopathy and lactic acidosis –> Barre Lieou Syndrome

Multiple instabilities of the cervical spine

Chronic Fatigue Syndrome (CFS)

Illio sacral joint instability, shoulder, knees, hips, shoulder unstable

Cranio Mandibular Dysfunction (CMD)

Low Vitamin D and other vitamin deficiencies

Lumbar spine: sacrilisation L5, left rotatory scoliosis, inflammation L3/4/5 and chrondosis L4/5 with disc polapse

Slightly decreased platelet function with hematoms

Insomnia

Dysautonomia

Small Fiber Neuropathy

Thoracic Outlet Syndrome

Factor VII Deficiency

Changes in the brain stem region

Interstitial Cystitis