Tatiana Jones

https://www.facebook.com/tatiana.jones.710
 The list of symptoms my daughter had for several months, which medical doctors attributed to anxiety and depression because she “looked too healthy and was too young to be that sick.”

Also, most of her tests used by the health system traditionally were coming out as relatively normal, but the more comprehensive tests she took and paid out of pocket for, from independent labs, were overlooked or ignored by physicians because they didn’t order those. Those tests were showing neural inflammation and physiological changes in her brain.

Doctors disregarded those test results and her statements because she was showing more knowledge of the disease than they had ever heard of. Doctors were too proud to admit that someone else with rudimentary knowledge in general medicine was smart enough to read and understand science articles and be able to diagnose herself by the process of elimination.

And why should my daughter and other neglected people with rare, complex, and poorly understood, poorly researched illnesses take that route? When will this stop? What about people not as witty as my late daughter? Do they stay in the dark for the rest of their lives trusting ignorant doctors’ opinions just because they have an MD title attached to their names? The health system of this country is in deep, murky water.

There are now non-medical companies in existence that are playing the role of “patient advocates,” helping people navigate between various health specialists, health insurance policies, claim rejection appeals, referrals, and complex terminology of test results doctors do not take the time to explain. (Solace Health as an example)

Shame, shame, shame! We need to take our right to accessible, affordable, and fair healthcare back! Who is with me?

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List of symptoms Lena had

Intestinal failure and a hypersensitive gut requiring intravenous feeding

Severe weight loss

Severe stomach pain

Nerve pain (neuropathic pain)

Body pain including constant burning, itching, crawling, and throbbing sensations

Unpredictable muscle spasms affecting limbs, head, and body

Post-Exertional Malaise

Profound exhaustion

Painful swelling of hands, feet, and face

Head pain

Severe Migraines

Ear pain

Tinnitus

Dizziness

Eye pain

Visual disturbances

Blackouts

Loss of proprioception [a reduced or absent ability to sense the position, movement, or orientation of your body parts without looking at them]

Loss of mobility, eventually becoming wheelchair-bound and then completely confined to bed

Loss of function

Persistent infections

Severe cognitive dysfunction affecting speech, memory, word recall, interpretation, concentration, and processing

Slurred speech

Muscle dysfunction and weakness

Nausea and vomiting

Swallowing difficulties

Numbness and pins and needles

Loss of temperature control and temperature sensitivity, overheating, and shivering

Extreme hypersensitivity to light, touch, sound, smell, and movement

Hypoglycaemia

Intolerance to heat and cold

POTS - postural orthostatic tachycardia syndrome

Sleep disturbance

Breathing problems and air hunger

Remembering Lena Jones with endless motherly Love