- CASE FILE
Crippling hand, joint pain. My growing pain story a decade in the making.
ABOUT THIS CASE FILE
My chase for the cure began a decade ago, I just didn't know it until 3 months ago. I'd spent the previous few years trying to find the cause of my debilitating mysterious hand /finger/feet pain. I spent the past year, desperately searching for a diagnosis, my symptoms becoming unbearable. I DID find my diagnosis, however I'm still looking for my cure. I want to share my story, so maybe I can help someone else find their cure.
If had I seen this show 6 months ago, I'd of thought it was a God send just for me. Undiagnosed & Desperate.
Three months ago I was offically diagnosed with a Pituitary Macroadenoma. A tumor on my pituitary gland that causes my body to produce excess human growth hormone. The disease is called Acromegaly. Andre the giant had this. He got it as a child before his growth plates closed, so he grew to be.. well a giant. If you get this disease as an adult, you can't grow taller. But your hands, fingers, feet, jaw, nose, sternum, organs etc can still grow. But you can Google all those facts.
I want to tell the story of how i was finally diagnosed with this rare disease. Because maybe its not as rare as it seems, maybe its just so hard to diagnose, that it goes undiagnosed in many. Maybe some undiagnosed have died from the cardiovascular problems it causes, but its just chalked up to unknown heart defects.
The pain can be so intense how many undiagnosed have been lost to the opioid crisis, attempting to alleviate their pain?
How many of those that have become addicted to pain meds are written off as junkies looking for drugs?
The first noticeable symptoms that showed up was around 11 years ago around the time my son was born and i got my tubes tied and that was adult acne. Of course that was written off as a consequence of stopping birth control. I know right.. Who knew.. acne to brain tumor.
Also around that time, i would get random painful bumps on my face and torso, they looked like big pimples, but wouldn't bust and took forever to go away, leaving scars. I went to my dr worried about MRSA, nope, I was told to use antibacterial bath wash.
Some of these would turn dark and harden like giant painful moles. I went to dr of course in case of skin cancer, i had the large ones surgically removed. No real dx, i was told it just happens to some people.
I started having mild wrist pain around that time, no surprise, i worked clerical, it was only a matter of time for some arthritis.
I did take notice that whenever my skin would flare up, my wrists seemed to ache. It seemed too ridiculous so, i let it go.
Somewhere in this time i started getting BAD sinus headaches, but they weren't constant and lined up with rainy days and changes in pressure. I didn't think there was anything i could do for them but pop sudafed and that always helped.
Even when i would wear sunglasses at my desk on bad days, it never made me think brain tumor. The dr wasn't concerned.
Within the next year or so, i saw my dr for possible panic attacks and anxiety, because i thought i was having heart palpitations, i wore a heart monitor for a couple weeks, nothing showed up, so i was prescribed something for anxiety. It was most likely the beginning of my heart starting to enlarge. And anxiety is a symptom of pituitary tumors.
Then i was seen for depression, i didn't really want to get out of bed and was just sad.
It was thought to be part post partum depression.
Now I know it was all hormonal.
About this time i gained about 40 pounds and couldn't lose it. Figured that was because i was 36 and had my 3rd child.
Here's where things really start happening, yet nothing too drastic or unexplainable.
I stopped wearing rings, my fingers were bigger and it was too uncomfortable, i figured I'd lise weight and i would wear them again. But my knuckles had also gotten wider, i had always been told not to pop my knuckles or they would get bigger and i always popped my knuckles. I remember thinking how embarrassing that rings that would fit other girls ring fingers i couldn't get over my pinky finger.
My feet were getting bigger, i went from a 7.5 to an 8.5 but i was told when you gain weight, have babies and age your feet can grow.
Years go by with all these gradual changes taking place.
By 2016 i was wearing a size 9.5 shoe. My feet hurt all the time, i assumed because my feet had gotten so fat they were tight in my shoes. I ended up wearing 10.5 size shoes to accommodate my width.
As a woman who enjoys dressing up occasionally, cute heels were impossible to find. Just finding gym shoes to fit was a chore.
Again i thought, how unfair that i ended up with DNA that caused my to have big hands and big feet.
I became unexpectedly single 6 months before my 40th birthday. It was hard time, I had a bad bout of depression for a few months. I did lose 25 pounds and started to feel better.
I got excited about starting my second chapter. I started dating again around my 40th birthday. I accepted and loved my new body, big feet and all.
I went for a check up because i started having my periods every 3 weeks and i was having them for 7 to 9 days, it was more annoying than anything but dr wasn't concerned it can happen to women in their 40s, she was more concerned that my blood pressure was high for the first time, i ended up being put on BP meds. Dr said it was just bad luck with my genes, it happens, if i lose weight it could help it. But i had just lost 25 pounds and i felt great, it didn't make sense to me.
Within the next year i met someone new, things were great. But i was tired all the time, i slept all the time, if i took a flight if stairs I'd get dizzy. After I fainted twice, blood work was done and it showed i was anaemic. It was from my heavy periods, so she recommended, i get an ablation to stop my periods. I would still have my cycle, i just wouldn't menstruate. Another symptom of my future disease, but after the ablation i would no longer know i was having irregular periods.
2016 is the year, when it all went down hill. Ive read extreme stress and depression in theory could effect tumor growth, well it was a very heartbreaking year and that's when my hand pain and foot pain started to get bad and effect my work. Insomnia lasting for days, then I'd be exhausted. Again i was diagnosed with depression. Maybe i was depressed also, but this was the tumor starting to really mess with my body.
I had carpal tunnel surgery in 2017. Within in 6 months the pain and tingling came back twice as bad. I went back to the hand surgeon, he took xrays and told me there is nothing he could do for me. He brushed me off, i felt like i was an annoyance to him.
By last summer, i couldn't get thru my work, i wasn't getting raises, i was getting wrote up for being late and low productivity. I wasn't sleeping and my mood swings were all over.
I had bad anxiety and was becoming very depressed. I knew something wasn't right, but my labs always came up good. A little vitamin d deficiency, easily corrected and i needed more protein, nothing major. I worried i was having mini strokes or something because my face was changing, i even showed my dr my different licences pictures and she chuckled and said its just aging and to relax.
I asked to be tested for lupus, then lyme disease, i asked to be tested for any STDs. Again my labs always came back clean.
I went to an orthopedic specialist, xrays showed some arthritis on my neck, hands and feet but nothing they could treat. Basically i was told i might be over reacting and making the pain out a little worse than it was. A friend referred me to a chiropractor, said it couldn't hurt to try, maybe i had a pinched nerve.
I got in the chiropractors office and couldn't stop crying, -the constant pain and fatigue with no reason or cure in sight was becoming too much. Being disregarded, called a hypochondriac, people thinking i was crazy. I Thought i must be going crazy.
She said she was going to do whatever she could do to help me find a reason for my problems.
I cried more, because she really believed me.
Whatever she did to my back and neck, was amazing, for a few days the pain stiffness and cramping eased. She referred me to get an MRI because she said she thought it looked like my pituitary gland was enlarged in a neck xray. By the time i got into have the MRI it was a month later. I called to follow up 2 weeks after the MRI, because i hadn't heard anything and that dr was no longer at the practice and no one else was in my network. So I assumed NO NEWS was good news. I went to a rheumatologist, the unfriendlist dr ever. She took more xrays, no results other than mind arthritis and prescribed me 800 mg motrin. I said ive taken enough ibuprofen to tell you that it doesn't help. She responded with, well are you trying to get pain pills or something? I left her office and never went back.
I became crazy searching on Google for hours looking at symptoms. I knew i wasn't crazy and something WAS wrong with me.
I kept thinking back to the MRI, but NO someone would have told me if i had a brain tumor.
It became a joke, it must be a brain tumor, to make me this crazy. Or it's the tumor talking.
Google symptoms nd webmd took over my life. I was going to get fired soon, i knew it, but really didnt care about anything but finding a cure for my pain.
One day in back in March i was bummed and joked its a good thing i'll never meet anyone again and get proposed to, how embarrassing if a guy asked me to marry him and he tried to slide a ring on my finger and it wouldn't fit my giant fingers. The friend noticed my hands and said "WOW you do have really big hands!" He didn't mean to hurt my feelings, i laughed too. Really it was like a humiliating kick in the gut.
But it was the missing piece to my symptom search and the reason i found my diagnosis.
Feeling angry and hurt i sarcastically searched for girl in pain with giant hands and pituitary gland.
Holy Shit! Acromegaly a very rare disease caused by a tumor on pituitary gland. This was it. NO doubt. BUT i was embarrassed to ask my dr about it, because whaaat are the odds, i already had an MRI and nothing came of it. I'll really look crazy. I had already seen a podiatrist who assured me it was weight gain and aging for my foot size.
2 weeks later i broke down and asked my dr for a referral to an endocrinologist to have my growth hormone tested.
I could hardly wait the 3 week's to get in to see her. But since i was starting to have recall and short term memory problems, i forgot my appointment and was too late to make it.
I called them frantically, worried they would refuse to reschedule. I begged them to please reschedule whenever they could get me in please, they were my last resort and i just needed my Growth hormone tested and something called IGF-1.
They did reschedule me 3 weeks later but with a different dr.
A week later i got a phone call from the original endocrinologist i was supposed to see, the actual doctor called me?? Whaaat? She asked if i could wait another week to come in, because she wanted to see me herself.
I agreed, obviously.
The day of the appointment, i knew i was on the right path, she spent an hour with me asking questions, she called the MRI company and got the results faxed in 10 minutes.
She stopped looked at me and she asked 'You? on your own, called and asked to have your growth hormone tested?" I told her yes and started to worry she was going to write me off too.
She looked upset and and said " I can't believe you've went thru all of this and no one has caught this, you have all the classic symptoms, i could see it in your facial shape when you walked in. Its a hard disease to dx, but your hand dr or podiatrist or dentist should have caught this. I'm sorry you've had to do this by yourself, but i am going to get you the best surgeon in town."
I said. "Uhmm excuse me..... uhmm so i do have a brain tumor?" She said" you didn't see the results of your MRI? I told her no, no one ever called to tell me i had a tumor.
She was speechless.
At the time i was so relieved to have a reason for all my medical problems and a potential cure, it didn't really sink in I HAD A BRAIN TUMOR and would have surgery. I ran back to work excited, telling my boss, I know what's wrong with me!! I'm not crazy, i have a brain tumor!!
I had 2nd MRI 2 days later, blood work done the day after that. 2 weeks later I had brain surgery!
She really did get the best surgeons.
Mine was a larger tumor, however that had been in there causing damage for a long time so they were able to get almost all of it. A part had wrapped itself around my carotid artery and was too dangerous to remove.
If they had gotten all of it, i could've been cured completely or in remission.
But my little piece of tumor is still producing excess growth hormone so now i'll start getting shots monthly to try and control it. If that doesn't work i could potentially have radiation to help treat it. There's always a chance of the tumor growing back since it couldn't be completely removed.
My pain went away for month completely, it was heaven. But the pain has returned, just in time to go back to work from short term disability. I'm pretty sad about that, i don't want to go back and tell my boss i've had surgery been gone for 12 weeks and i'm not any better. We are hoping the shots will put me in remission.
So i still have a long road ahead of me for a cure, but at least i know why.