Believe It Or NotThe Lonely Voices of Autoimmune Disease

Struggling to regain vitality after 15 years of misdiagnosis and another 5 years of not quite getting all the pieces of the

puzzle in place

It took more than 11 years to be diagnosed and once I was diagnosed, it took 3 practitioners before I received adequate treatment…

My teenage daughter also went undiagnosed for 2 years and standard practitioners refused to treat her

I am a patient who fought 2 years for a diagnosis and

on the day I was finally diagnosed I was also told I had thyroid cancer and it was

1 mm from breaking out!

My daughter was diagnosed with ulcerative colitis at age 5, now 6

I have hashimoto’s.

It took me 5 years to get that diagnosis and another 8 to finally be put on armour thyroid!

It took 7 years and more than 13 doctors to get them to even TEST for my autoimmunity.

They diagnosed depression, chronic sinusitis, back problems, possible tumors, lazy, etc.

It took 10 years to diagnose my RA.I had repeated episodes of joint swelling and terrible pain but when these happened it was almost impossible for me to get an appointment with my general practitioner so I went to urgent care as they suggested.

It wasn't until a colleague suggested RA as a possibility during a particularly painful flare in my knee, that I specifically asked a

practitioner at urgent care about it and she ran some blood work.

Took me 5 years and 12 specialists to be diagnosed with celiac and hashimoto’s.

I want the next person to be diagnosed on the first doctor.

Care has been inept at best, based ONLY on lab work and not subjective symptoms. When I try to discuss symptoms I am either written off, told I need a referral to psych, or the extra infuriating "you just need to lose weight and exercise more”

I am just expected to troop on…no assistance available.

You go in to see one doctor about an issue and he tells you it's probably from x, and gives you one treatment for it, and you still experience problems from it. So you bring it up to one of your other doctors and they say it's from y, and that you need to be taking this other treatment, and you try that and it may help but still doesn't take the problem away.

Your first doctor shakes his head because you even tried the second treatment, but you just want HELP!

No one seems to want to listen.

I struggled with stomach issues, losing hair, gaining weight, losing pigment in my skin, headaches, brain fog, fatigue etc. for over a year.

I went to many different doctors.

One would give me pain medicine for my stomach, one gave me a cream for my skin, one told me to exercise more and so on.

No one wanted to find the root cause of these things. They just wanted to treat the symptoms.

“Your numbers are within the normal standard. Retest in a year.”

Even though I had an increase of fatigue, constipation and chronic migraines.

Having to sound like I'm crazy because no one takes my symptoms serious!

10 years and my thyroid is out of balance and

everyone is ok to keep passing the buck!

It should not be a one size fits all approach.

Doctors/Healthcare providers do not take or have the time to coordinate care plans. It seems that everyone is doing their best just to put out the fires rather than looking for an underlying cause.

I receive care at a VA facility. They are not concerned about your health so much as they are wanting to prescribe drugs for depression – that's always the very first question they ask you – “are you depressed, are you suicidal?”

I'm most frustrated by doctors who fail to look at the phases or progression of disease.

Who look at blood work with an eye on what to treat with a pill or prescription and who aren't willing to (or simply don't) consider food, stress, sleep, hormones, environment, toxins, etc. as a factor in what's not right.

My Rheumatologist bases things off of my lab results and not how I'm feeling.

The first neurologist I went to see about my MS brushed off my questions and concerns about medication and said that it didn't matter what lifestyle changes I made, MS would cripple me

and I would die from it.

I went through several decades of primary doctors dismissing my symptoms because the tests they chose to run came back "normal".

When I was diagnosed with Grave's disease, my endocrinologist didn't think to also look for celiac

disease, but the 2 very often go hand in hand.Even when Grave's went into remission, I was still

sick, but he said,

"well, I fixed the Grave's disease, off you go, I'm done with you"

After now 10 years of Hashimoto's/Papillary Carcinoma surviving, I still get opposition when I bring up other autoimmune symptoms.

I’m tired of the run around and having to know more than my doctors!

I suffered for 10 years with bone pain and liver area pain - increased LFTs - only to be told for those 10 years that I was depressed and it was

like phantom pain

I've been told too many times that I was too young to have the symptoms I was having, i was refused proper care and testing for "old people" diseases and disorders. This happened from my 20s on.

I'm almost 40 and it happens less now, but it still does happen.

I was originally misdiagnosed as being a mental/psychiatric patient and spent almost 3 weeks on the mental floor before finally being

moved to the medical floor.

I was in my early twenties when I began experiencing symptoms, which doctors dismissed as me being a hypochondriac.

Even after a specialist asked my PCP to test me for Rheumatoid arthritis, my PCP initially refused because she thought I was too young

They treat me like I'm crazy instead of finding out what the problem is.

It's sad when I know more than 6 or 7 specialists.

My biggest frustrations are with providers jumping to common conclusions.

Before my diagnosis of Hashimoto's I was diagnosed with depression and was told that my other issues

were just symptoms of the depression.

I can't tell you how long I was under medicated and told my labs were fine – and that I was fat because I was lazy and had no self control...

Or that all my other symptoms were unrelated...

Or that it was all in my head and I should see a psychiatrist and take anti-depressants.

I have been called a liar by more than one doctor.

My husband has had to come in to defend me.

I find it horrifying that I don't know a single female in my age group that does not have an autoimmune condition of some sort.

There is something very wrong with that picture and no one seems to be concerned that illness is the new "normal.”

Most of us have suffered huge changes in our lives and what we are able to do. Our relationships suffer because spouses don't understand symptoms. The medical community provides little validity and back up to our very real experiences.

Most days I feel like I am just doing what I can until I die..not a whole lot to look forward to except for a

gradual worsening of my physical symptoms.

I Wish …

Treat the body as a whole, not as a series of numbers on a lab report.

Recognize that there are aspects of these conditions that are not yet defined and understood, and support research that improves care.

I Wish …

I would like the world to see the similarities between autoimmune patients/conditions. We have more in common than most people realize - symptoms, and especially triggers.

I hope for better data sharing among institutions that hold autoimmune patient data, so that these

trends and insights can become possible.

I Wish …

Team of doctors together working together to determine diagnosis and best outcome for the patient.

To really listen to the patient to be more understanding of our challenges and symptoms.

I Wish …

The main thing is to get the providers to believe each other.

I Wish …

Seeing autoimmunity as a possibility and making it more of a standard test than one a patient has to BEG for.

I Wish …

I just want to walk my 8 & 12 year old in senior night or hold my grandchildren or spend quality time with my husband when the kids are grown.

I don't want to be a burden, I am 35 and since 2 weeks after I turned 30 I went from optimal health

physically to total destruction and no one has an answer.

I Wish …

Quit treating patients like they don't know their own bodies.

Listen to their suggestions, support their desired treatment plans and quit pushing synthetic drugs where natural ones are available for treatment.

I Wish …

to eradicate autoimmune diseases entirely!

They are the hardest to diagnose, treat and they are hard to live with. Your body is attacking itself on the inside, you are at war and beaten down on a regular basis, yet on the outside you look fine, so people have a hard time grasping the battles you entail or the pain you're in.

To get up one day and have a cure and know that I would never have another flare would be miraculous.

Bonnie Feldman, DDS, MBABusiness Development for Digital Health

The Lonely Voices of Autoimmune Disease2015

+1.310.666.5312

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