The Diagnosis that Solved Everything: Acromegaly

It was my mom who pushed me to see my primary care physician for what seemed like the 20th time this year. Thanks to the bane of my existence–Obamacare–my ability to afford insurance and see the doctor has been akin to being chased by a bull at the rodeo.

Wait, … it’s been akin to being chased and stabbed by a bull at the rodeo.

Obamacare is a pain in my ass.

This year, however, I’d signed up for an HMO plan–the only plan available in the Great State of Texas for those like me who are privately insured–and had chosen a plan where the out-of-pocket cost was only $3,750.

Today is May 29, 2017. I’ve already met my deductible.

When I chose my plan in November of last year, a great debate was held in my parents’ home with my mom, dad, and Mr. M.

2017, we’d decided, would be the year we solved the mystery of my knees.

There was not going to be another year of shuffling. There was not going to be another year of head pats and injectable band-aids. I was no longer going to wear the hat of a chronically disabled woman without any true underlying issue–because a tear to the back of the patella and chondramalacia is not enough of a diagnosis for the debilitating pain I’ve lived with since 2012.

The pain that kept me from dancing, jumping, running, skating, hopping, finding toys under the couch, or even walking down stairs.

As all the doctors patted my head in a “shut up and go home” way, they never saw the grimace on my face as I lumbered toward the floor on knees that felt like water balloons to search for a wayward Lego. They didn’t see the hestitation in my eyes as I wondered, “Now what?” once I was on the ground.

What I wanted was to live life to the full, or at least have a reason why I couldn’t.

Instead, I had begun to believe it was all in my head.

Little did I know it would be.

2017 came, as did my insurance card. Except, lo and behold, the PCP’s name was incorrect. I’d been assigned an internist instead of a physician. For the next month, until I was allowed to see the doctor, I would laugh about how an internist would be unable to fix my knees. For the next month, I would wait through the pain, praying that they would find a meniscal tear and make me whole again.

When I was finally able to see my PCP, I would be given steroid packs, steroid injections, handicap placards, MRIs, and fruitless referrals to the rheumatologist.

At one point, in the wee hours of the night, as I was visiting my brother-in-law and twin in Louisiana, I looked at my brother and told him my hands had started hurting. They hurt when I held my phone. They throbbed when I turned the pages of a book. I knew I felt this pain as fiercely as I felt the pain in my knees. Deep down, however, I knew nothing would come of it.

I knew I didn’t have RA.

The next week, or shortly thereafter, my intuition was correct.

But my hands still ached.

Not even a trip to the ER, when my knees and ankles screamed with the pressure of clothes, revealed anything. A $1,000 and a bottle of Tramadol later (edit: 8 pills), and I had a doctor tell me that I must have an autoimmune disease due to the reaction of my body coming off of steroids.

By that point, two months into having this HMO plan, I no longer wanted to visit my PCP. I no longer wanted this to be the “year” I found the basis for my knee pain. This was another year of head pats and guesses; another year of “pass the patient along.”

The pain was in my head; I had to be imagining it. Nothing made sense. I was spiraling into despair. Pain had been my normal since 2012, and it would be my normal until I died. I was done with doctors; done with hearing that they couldn’t find anything truly “wrong.”

It was my mother who pushed me to go back to the PCP for another referral.

**Side note::it’s about to get a little TMI up in here. Run while you still can!**

My lady parts had also decided to break during this time, but I couldn’t see a GYN without a referral–and my new HMO didn’t cover my old GYN.

I sat in front of the new gynecologist and told her everything–from my lady parts breaking through a history of having abnormal PAPs without the presence of HPV (which is apparently extremely rare, but none of my doctors ever cared before this one). I told her about the negative diagnosis of RA, but the persistent pain in my knees and hands. Instead of blowing me off, like my previous lady doctors, she ordered a series of blood panels, including a full hormone count. She also ordered a pelvic ultrasound.

By this point, I believed everything would come back normal, because it was all in my head. I was making everything up, or exaggerating the pain and problems in my head.

I knew, without a doubt, that I was chalking this visit up with all the others: pointless.

The blood work lasted seconds with a cheerful phlebotomist. The radiologist took longer, and managed to spook me with questions that made me ask, “Should I be worried at these questions?”

On Monday, May 15, everything changed. My gyn sat in front of me and asked if I was on any crazy diets. I laughed, because … hello, queso! She then informed me that my growth hormones were double what they should be, and she was ordering an MRI to see if I had a tumor on my pituitary gland.

My brain shut down at the word tumor, but she rattled on, explaining that she didn’t think I had a tumor, because this is an era of crazy dieting schemes. Crazy diet schemes that can mess with women’s growth hormones.

I wanted to believe her, so I latched on to that.

She then said my uterus is trying to kill itself (but she used a technical word that I can’t even pronounce), ordered a hysteroscopy, and threw around the word “hysterectomy.”

I asked her to stop speaking. Tumors, MRIs, surgeries, uterus killing itself. I mean, that’s a lot for one visit! I’d been visiting doctors for years who only guessed at reasons for my pain. Here was a doctor telling me I had real problems with my body, and it wasn’t all in my head.

The MRI was scheduled for Monday, May 22. Mr. M came with me. He held my foot while I laid on a cold bed, in a loud machine, with a cage over my face. Neither one of us believed there would be a tumor. For me, it was every other negative test I’d ever had. Knee MRIs, breast MRIs–all tests ordered with the thought that something would be found … but nothing ever was.

Insert a ultrasound technician running out of my breast MRI and back into the room while breathing an elated, “Okay, so, it’s not cancer! Come back when you’re 40!”

That’s been my life with doctors so far. “It’s nothing bad! I mean, we wondered, but nope! Have a nice life!”

That’s what I believed would happen this time as well. But, it didn’t.

My doctor called later that evening, explaining that the technician had found a small tumor in my pituitary, which was causing the growth hormone to be released in excess.

Apparently, the problem had always been where I’d feared it was: in my head.

Now that I know what it is, I can work to fix it. Even better: my diagnosis has also solved the long-standing mystery of my knees.

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