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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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?
Having Chiari Malformation I know this all to well took me over a decade and a grand mal seizure in a dentist chair to get there attention and a Diagnosis and that was only the beginning of a long journey that is never ending :(
ReplyDeleteYes, Chiari Malformation is an Invisible Disease that defies medical explanation because the diagnosis is not in the mind of the evaluating doctor. Many doctors have simply not seen one patient with this disease, so they don't recognize it. Maybe if the doctors had to go to get formal Education in Invisible Diseases, it would help for them to go through a typical presentation, tests, findings, and a diagnosis. I'm sorry for all the suffering you had to go through before you got a diagnosis. But I'm glad you are here to be a Voice, and to help pave the road for others behind us.
DeleteHighest Personal Regards,
Dr. Margaret Aranda
http://www.drmargaretaranda.blogspot.com
I have never seen a chart like this before and it's about time! I have had to deal with this for as long as I can remember in more ways than one. I grew up with a mother who had what should have been a visible disease, a meningioma brain tumor she was told could have been growing for decades. She saw lots of doctors and not one ever told her to go to a neurologist or to get an MRI. She really suffered. Lots of antibiotics for bladder infections, an operation on a bad foot, being told she was just fat and depressed, almost dying and being told if she hadn't of fallen when she did that she would have died within two weeks -- unacceptable! As a doctor, I'm sure you can appreciate just how difficult that would have been to be around as a child growing up. As for myself, just enjoy your day, stay out of the weather, gain weight, lose weight - TAKE THESE, I think you're a little depressed - TAKE THESE, you're just really allergic - TAKE THESE, we need to do something about that brain fog - TAKE THESE, you won't feel like exercising without something - TAKE THESE. From seldane to vioxx to topomax and in between, I have taken meds that only did harm as far as I'm concerned. The benefits outweigh the risks they say -- but I don't buy it! My symptoms never went away. Me to the doctor - I don't think I should have had physical therapy before doing an MRI. Doctor to me - I think you need to go to a psychiatrist -unacceptable! Other things I've been told are I don't know what to do with you, these collagen diseases are tricky (said to me by my old pediatrician that I ran into when I was older -- he had never spoken of collagen diseases to me or my mother and had offered absolutely no help on the matter), we'll need to watch and wait (said to me by my neurologist as I continued to run around lost with no direction and no real quality of life). If the goal of waiting is so that a patient can sleep her life away, than he succeeded -- but that isn't a life and no patient wants to wait for answers. Dr. Margaret Aranda, thank you for being the voice of patients with invisible diseases.
ReplyDeleteI'm sorry that your story is just one of many, many similar stories. And that you had to go through this as a child with a sick mother...that is hard, almost too hard for any child to bear. I know you are mad, and I feel the years and the worn out nonsensitive 'remedies'. All too common. I hope your mother is better now with a diagnosis, and I'm sure that you were her happiness in everything. Now you are grown up with some loss of your childhood, because you had to be the caregiver, too. I get it. We need you to stay with us and let's turn this into something good, something positive, something that changes things for the future. I can't do it by myself. So stay with me and know that I'm not going to rest until our story is told. Until it is told over and over again and someone somewhere does something to make it better for everyone. IT's About Time!
DeleteDr. Margaret Aranda
www.drmargaretaranda.blogspot.com