Pheochromocytoma - Could This Be It?

I had an appointment with a new neurologist yesterday to - once again - discuss my mystery symptoms. Though I've been seeing a cardiologist, as well (for the sudden rapid heartbeats), my internist suggested I follow up with a neurologist. For the first time EVER in 20 years, he asked if I had ever had my urine tested for these symptoms. I told him I hadn't. He was surprised that no one had ever suggested it.

There is an adrenal disease called Pheochromocytoma. Its extremely rare (only 800 people are diagnosed with it per year in the U.S.). However, it presents with EXACTLY the same symptoms that I have had for 20 years. Basically its a tumor in your adrenal glands, which are the glands that release epinephrine (adrenaline) and norepinephrine (noradrenalin) into your body.

A friend of mine who is a chiropractor, had simultaneously suggested that I might be having sudden surges of norepinephrine, which would be causing my symptoms and "episodes" (or "Head Things" as I have so fondly called them over the years).

Now I don't know if this is the answer, but for the first time EVER, I feel confident that something is going to be found. Odd, right, that I'm hoping something will be "found." Well when you're a person who has been suffering from something debilitating for so long, ANY answer is a good answer. You just simply want an answer.

For details on Pheochromocytoma, there's a great support group / website called Pheochromocytoma.org. If you've had symptoms like mine (sudden rapid heartbeat, sudden surges in the head, weakness in limbs, pounding headaches, night sweats, nausea and vomiting), you might want to check into it. It's rare, and - from my experience - not a lot of doctors even venture into ruling this in or out for these symptoms. Everyone automatically jumps to "you're having panic attacks."

So fingers crossed. I hope this is it for me. I want an answer once and for all.

Morgellons Disease

Tiny blue, black or red fibers mysteriously appearing under the skin. Red, itchy welts from an unexplained source. The disease has been labeled "Morgellons," although most medical professionals are not so quick to embrace it just yet. Some psychiatrists have even gone so far as to label those who complain of the fibers as having "Delusional Parasitosis," "Dramatophobia," or "Bugaphobia." I label these psychiatrists as "irresposible" and "reprehensible."

It angers me to my core that the people suffering from Morgellons would be dismissed as kooks. Especially since the CDC has been investigating Morgellons and has recognized that it is real. They're just not sure of its origins or why and how it strikes.

Here's a news story about Morgellons from 2007. And the information on Morgellons from the CDC.

I hope you'll take the time to look this over and recognize that it is very real. We need to support those who have this disease and let them know that we BELIEVE in their suffering. Because if there is anything worse than having an undiagnosed illness, its having those around you not believe that your symptoms are real.

If you suffer from Morgellons, post your stories here, or on The Med Detective Forum. You are not alone.

Heart Attacks vs. Mystery Illnesses

My dad had a mini-stroke on Thursday. A TIA (Transient Ischemic Attack). He was admitted to the hospital where they ran numerous tests. They found that he had an 80 percent blockage in his carotid artery and 90 percent blockage in one of the arteries going to his heart. They did a catheterization on his heart today and put a stint in, opening that artery up. In 10 days they'll tackle the carotid. If all goes well today they'll send him home tomorrow.

Nice and clean. Cut and dry. One part of me (the practical side) looks at this and says, "THAT'S what medicine is about! Right there. Run the test, see what's wrong, go in and fix it." Beautiful. Medical art at its finest.

Also through testing - an MRI showed that at some point in his life he had a previous stroke. And an Echo of his heart showed that at some point in the past he had had a heart attack. Though he was aware of having the stroke, he never knew he had a heart attack. Amazing. To have the technology that unravels clues about past illnesses is truly a miracle. But we all know that that miracle doesn't apply to everyone's illnesses. For some of us they go unlabeled for years, even decades.

If you're reading this blog its because you're one of the thousands of people who, like me, have mystery illnesses where the diagnosis isn't so cut and dry. And if you're like me, you look at situations like my dad's and say, "I wish they could do that for me. I wish they could go in, see what's wrong with me, see what WAS wrong with me in the past and fix it. Just fix it!" Well, what I've learned from research and reading - not to mention my own 20-year battle with a mystery illness - is that its not always that easy.

The most important thing is to find a doctor who will be your PARTNER in your quest. I truly believe that every illness is solvable. We just need to find a physician who is willing to take the time, expend the energy, and muster up the enthusiasm to solve our personal medical mystery.

And then, like my dad, we can all be fixed and free of our pain and frustration.

"Oh Honey, It's Just Stress"

It seems to be the diagnosis women hear time and time and time again, "Oh honey, it's just stress!" That's what doctors told Karima Hijane for two years. Until finally, a study through the NIH, revealed otherwise.

Read Karima's story of misdiagnosis here. Another reason why we must always persist when we know our bodies are crying out for help.

America's Best Hospitals

The list for the 2009 America's Best Hospitals has been released. In its 20th year, the list ranks institutions in 16 specialties, from cancer and heart disease to respiratory care and urology. A total of 4,861 hospitals were considered; 174, or less than 0.4 percent of the total, were ranked in even one of the 16 specialties.

It's nice to see that UCLA has taken the #3 slot, right under the Mayo Clinic. Also great to see that University of Michigan made the Top 15, as well. Check out the full list to see if your local hospital took top honors.

Inside The Minds of Doctors

Two book recommendations from friends I thought readers might enjoy:

HOW DOCTORS THINK by Jerome Groopman

COMPLICATIONS by Atul Gawande

In HOW DOCTORS THINK, Jerome Groopman talks about how doctors mostly get it right, but unfortunately, occasionally get it wrong. A good read for those of us who look to our doctors for help and are frustrated when they can't provide us with the answers we are seeking.

COMPLICATIONS: A SURGEONS NOTES ON AN IMPERFECT SCIENCE by Atul Gawande admits that - as the title states - medicine is an imperfect science. Sometimes medical professionals make mistakes, learn on the job and occasionaly get things wrong. Gawande reminds the reader that doctors are human, too. Something we should keep in mind when we step into their offices. Perhaps if we could learn to communicate with doctors as humans, rather than the "Gods" we see them to be, we could get our symptoms across more effectively.

I just ordered both of these books today. I'll post reviews as soon as I'm finished reading them. Feel free to to post your own reviews here.

Saved By a Doctor Who Listened

Another great (yet disheartening) story from the Washington Post. This was a woman who presented with symptoms of nausea, vomiting and stomach problems first thing each morning. They would subside as the day went on. Many doctors dismissed it as "stress" (of course - isn't that what they do with all women?). Until she stumbled upon one doctor - by accident - who immediately knew what her problem was, and ultimately, saved her life.

Check out the full story here.

It Wasn't Just Tinnitus After All

A great story on a patient's perseverance to get to the bottom of a horrible whooshing sound in his ear. Dismissed by three doctors, he finally found someone who stepped out of the box and found the source of his problem.

Bravo to the doctor who paid attention. He saved this man's life.

Read the full story from the Washington Post here.

How Far We've Come

I often get frustrated because doctors can't diagnose my problem. Today - while searching for a sibling of my mother's who died as an infant - I ran across this list of deaths from the 1850s. Its pretty mind-blowing to see the things that people died from in those days. Infants dying from "teething" and "diarrhea". Adults dying from "consumption." We've certainly come a long way. I have to keep that in mind when diagnoses elude those around me.

My Medical Mystery

I call it, "My Head Thing." Since my early 20s its the only way I know how to describe the feeling that comes over me when this "thing" happens. It comes out of the blue. One minute I'll be going about my day and the next I feel an incredible weight inside my head. Like a squeezing sensation. Kind of like an elevator feeling. I don't lose consciousness, but I sense a definite darkness in front of my eyes, as if a shade has been pulled down in front of me. My extremities are the next in line to go. I get almost an electrical shock feeling in my hands, followed by complete weakness in my legs. Then my heart goes BAM! Super rapid heartbeat followed by sweating, hands shaking, dry mouth, dizziness and just complete and utter fear.

It usually subsides within a half hour.

Doctors have labeled this as everything from Panic Attacks to SVTs to TIAs to Vasovagal Syncope. I label it "Hell." It has come to rule my life, my activities and my entire psyche. There was a time that I was fun-loving, happy-go-lucky and always on the go. But as these clusters occur (they always occur in clusters - I can go a couple of years without having an episode, then once one occurs I have them for months on end), I find myself retreating further and further into seclusion.

Its through this "disease" that I have come to understand how people can become agoraphobic. It seems safer to be home than out in public. I absolutely DREAD being in circumstances where I feel there is no way out. Dinner with strangers, movies, weddings...anything that would keep me in one place for a set amount of time - where an episode would be an embarrassment to me or an interruption of the event - causes me to avoid those events completely.

I just want an answer. I've had every test under the sun. MRIs. CT Scans. Tilt Table Tests. 31-day Holter Monitors. EKGs. EEGs. Doctors have found that I have mitral valve regurgitation (not what's causing this), a cyst on my right temporal lobe (not what's causing this), and sometimes high blood pressure (not what's causing this). No one can pinpoint the cause of my symptoms, and therefore, make them stop.

If you have had similar symptoms and have found an answer, by all means send it my way. Meanwhile, I'll continue my search.

And if you have a problem that has gone undiagnosed, send me an email and I'll post it on this site. Perhaps there is someone else out there who is facing the same symptoms and just needs a little comraderie in their search.

Searching For An Answer

I'm starting this blog for people like me. Who are people like YOU who might have a medical problem that has gone undiagnosed for years and are just searching for an answer.

Since my early 20s I've had a problem that has gone undiagnosed. Countless tests, doctors visits, and thousands upon thousands of dollars have yielded nothing in return. Zip. Nada. Nothing. To say I'm frustrated is an understatement. I can't tell you how many times I wished HOUSE actually really existed. A doctor who was so into my problem, he'd stop at nothing to find an answer.

So that's what this is. And that's why I'm here. Not only will this blog be an ongoing journal of my personal journey, but I'm hoping you'll post your medical mysteries here, as well. Who knows, perhaps together we can help each other come to the bottom of whatever ails us.

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