Sunday, January 20, 2013

Invisible Diseases Speaking Out: "It's About Time"

by Dr. Margaret Aranda



Millions of women (mostly) present to Emergency Rooms and doctors with complaints that haunt them, sometimes for years. They are frustrated because their quality of life is greatly affected by their symptoms. Many times, they leave only to be told "It's your hormones." "It's just depression." "There's nothing wrong with you." Or all to commonly: "It's all in your head." 

They wait, they suffer, they persevere, and perhaps after 3 years, 7 years, or 15 years of suffering, they finally get a diagnosis. The emotional, financial, and family tolls pale in comparison to the havoc their bodies have wreaked on themselves. They are not given referrals to Specialists, nor are they viewed with an attitude of "Wow. This is a challenge. Let me see if I, the doctor, can come up with the diagnosis." Instead, the prevailing attitude seems to be: "Well, if no one else could find out what is wrong, what makes you think that I will?" Or, "If I've never heard of it, then it must not exist." 
Our reply: "It's Time for a Change!" And not only that, 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~It's About Time!~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We say "It's About Time" for a Change. "It's About Time" to be Heard. Here's a List of Invisible Diseases with Complaint, Medical History, Physical Exam findings, and a final Diagnosis. It's just a start. We would like to see Required Continuing Medical Education in Invisible Diseases to streamline care, get to a diagnosis, recognize when a Specialist Referral is indicated, and stop wasting our time. We don't have time to spare. We have lives to live, we have children and husbands to care for, and we want our lives back. It's About Time.

Patient Complaint
Medical History
Physical Exam
Tests
Final Diagnosis
“I feel like fainting when I stand up”
Car Accident
Lungs and heart, skin of face
None
Dysautonomia
“Headaches, fatigue, imbalance, nausea”
Nothing significant
HEENT normal
MRI of brain
Chiari Syndrome
“I have imbalance”
Hx Right Vertebral Artery Dissection from MVA
Neurologic exam of extremities only
MRI brain, MRA vertebral arteries
Nothing wrong; needs anti-depressants. Patient not treated.
“Feeling tired, brain fog, memory problems, muscle pain.”
Also has hives, headaches, throat sores, sleep disturbances.
Runny nose, itchy eyes, cognitive dysfunction
Reproduce symptoms with chemical exposure
Multiple Chemical Sensitivities
“I cant walk in a straight line”
Car Accident
Extremities, balance
EMG
Vertebral Artery Dissection
“Pain and fatigue. If you touch me, it hurts”
Sickly as a child
Nothing notable
Blood labs for inflammation
Fibromyalgia
“I can’t turn a corner without feeling like the earth is spinning.”
Can’t watch a tennis match, gets carsick often.
Unable to track without getting severe nausea.
No further tests needed.
Vestibulo-occular Dysfunction Syndrome
“I just can’t get out of bed.”
Nothing detected. Previously healthy.
Looks tired. Nothing notable.
Immune Function
Lyme Disease
“I’m fatigued all the time.”
Previously healthy.
Nothing notable.
Lupus antibody
Lupus
“My heart beats fast when I stand up.”
Also feels like fainting.
Nothing notable.
None.
Postural Orthostatic Tachycardia Syndrome
“Abdominal pain, bloating after a divorce”
Diarrhea.
Abdominal exam, white blood cell count.
Send stool for blood and bacteria test.
Irritable Bowel Syndrome
“Dizziness, fainting. problems with erection.”
Just lost his job.
Red blood cell test, iron test, blood pressure and heart rate evaluation.
Send labs for testosterone, other blood studies of electrolytes.
Pure Autonomic Failure
“Headache, vomiting, back pain.
Vomiting with no nausea.
Papilledema
Cushing’s triad: elevated systolic BP, wide pulse pressure, bradycardia.
Intracranial Hypertension
“Headache, irritable, shaky”
Every day for the last week.
Blood pressure shows 180/100 mmHg.
Send to ER.
Hypertension.
“Lightheaded, nausea, feel hot before fainting.”
Feels like “impending death”. Triggered by standing up fast.
Orthostatics.
Tilt Table Test, Holter monitor, echocardiogram, electrophysiology study
Vasovagal Syncope
“Headache, imbalance, orthostatic.”
Sees chiropractor for neck pain, who does manipulations.
Neurologic exam for balance.
MRI/MRA of vertebral arteries; Spiral CT Scan, Angiogram
Vertebral artery dissection
“My joints sprain easily, I have muscle pain and joint pain.”
Easy bruising, gastritis, IBS, lots of chest infections.
Beighton Scale for joint hypermobility,
Collagen gene testing
Ehlers-Danlos Syndrome
“Pain and swelling in hand after a fall. They told me it’s just a wrist fracture.”
Taking pain medications. Says pain is worse then having a baby.
Note color and texture changes with the skin.
x-ray, thermography, sweat testing, electrodiagnostic testing
Complex Regional Pain Syndrome, (formerly Reflex Sympathetic Dystrophy)
“Migraine, blurry vision, difficulty swallowing, imbalance.”
Also wobbly when standing with eyes closed.
Neurologic exam for balance.
Somatosensory Evoked Potentials (SSEPs).
Hypoperfusion to Brainstem; Mini-Stroke of Brainstem.
“Confusion, brain fog, slurred speech”
Also with dizziness, aphasia, incoordination.
Failure to do serial sevens. Inability to remember 3 objects.
Brain scan.
Traumatic Brain Injury
“I get too emotional with outbursts sometimes; also disorganized.”
Hallucinations.
Movement disorders, trouble following instructions to move parts of body.
Brain scan.
Frontal Lobe Atrophy
“Abdominal pain, hives, diarrhea, fainting”
Irritable, unable to concentrate.
Presence of urticarial pigmentosa.
Skin biopsy, Bone marrow biopsy.
Mastocytosis
“I feel fine.”
Bad eating habits, visits junk food Drive-Thru almost every day.
Routine physical exam shows abdominal obesity, hypertension.
Lipid test, cholesterol, glucose, hemoglobin A1C.
Pre-Diabetes
Back pain, eye dryness, red and puffy hands.
Male Axhkenazi Jew, both parents with Familial Dysautonomia.
Decreased pain or temperature sensation, decreased DTRs.
The initial clinical diagnosis is made with no labs.
Familial Dysautonomia
“Memory loss, forgets appointments.”
Long-term memory intact, can not recall Serial 7’s.
Neurologic exam normal.
Referral for neuropsychiatric testing. Return to clinic in 5 weeks.
Alzheimer’sDisease.
“Just here for annual checkup. No Problems.”
Healthy, postmenopausal. Has trouble losing weight even though she says she eats better.
Normal physical exam.
Labs to include endocrinology labs, thyroid function, female hormones, HgbA1C, Vit D
Pre-Diabetes,
Hypothyroid,
Postmenopausal, Osteopenia.




We want medical students and practicing physicians, nurses, nurse practitioners, and physician assistants to be familiar with the subtle presentations of patients with Invisible Diseases. If you went through trials to get your diagnosis and it is not listed here, tell us about it. If you still do not have a diagnosis and want help trying to get one, tell us about it here. If you have a story that validates what we are saying, then tell your story here. 

It all starts now. 

It's About Time! 


No More Tears: A Physician Turned Patient Inspires Recovery
Archives of the Vagina: A Journey through Time (has Table)
by Dr. Margaret Aranda
BUY IT NOW: www.drmargaretaranda.tateauthor.com/other-works/
ISBN: 978-1-62205-838-2


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Additional Articles by Dr. Margaret Aranda



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Age 31: The Color Blue




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No More Tears: A Physician Turned Patient Inspires Recovery






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Muaaah!

And for those of you who don't know my story, I'm a doctor who was in a car accident. I sustained many Invisible Disabilities and the doctor's didn't seem to believe my complaints. I finally was diagnosed with: Traumatic Brain Injury, Diabetes Insipidus, Vertebral Artery Dissection with Aneurysm, Dysautonomia, Mal de Debarquement Syndrome, urinary incontinence, hypovolemia, and more. I had shoulder surgery for a rotator cuff injury, and spinal stenosis surgery with fusion and a metal plate in my neck. I couldn't swallow for three months and believe me, it was better to just have dysautonomia and lay in bed than to choke on my food, too.
I was in bed for 6 years, and on an iv for 3 1/2 years.
I'm still in bed as I write this.
But I am doing better. Thank God there's no Hum Drum, Drip Drop of an iv any more.

If anyone ever tells you that you can't be what you want to be, 
you can't do what you think you can do, 
or you will always be in a wheelchair, 
just look at them.
And forgive them, because you realize that they just don't know who you are.
You are You.
You can try. You can try to do anything you want. 
Defy the Odds.
Be the miracle.
Someone has to be the miracle....why not you?