Monday, July 28, 2014

MRI Results: Too Much Brain to Contain

I wasn't expecting to hear anything for a week, because that's what the MRI tech told me, but my primary care doctor called me the next day to talk about the MRI. It went something like this:


"So...what your MRI showed is that you have a congenital abnormality..." she began. "Your cerebellum is slightly enlarged, and it probably has been for a long time or forever, and you just didn't know it because you've never had an MRI. It's called Chiari I Malformation. This could be causing headaches..." 

She said more stuff but I kind of spaced out thinking about this news. She said she was going to send me over to Neurology. They'd be able to read the MRI and tell what's happening. She also said she was sorry I had had so many appointments but she thinks this is definitely something I want to look into.

Chiari I Malformation

What is Chiari I Malformation?
From UW Health:
In this condition, the back part of the brain extends into the spinal canal. Each person has different symptoms. Many times people with this problem also have a spinal cord cyst (an abnormal collection of fluid). This cyst is called a “syrinx”. This cyst could also be the cause of the symptoms.
I don't see neurology until September and I'm going to relax until then. I'm sure they'll tell me it's no big deal and of COURSE I don't need zipperhead surgery. Right?

Yeah. I'll try and relax.

I found an interesting blog to read if I don't feel like relaxing, though: http://chiari1.tumblr.com/

Crazy Time

I've been all over the internet reading about different experiences, and different recommendations... What things are no-nos for those with this problem, like roller coasters, trampolines, or even using those salon sinks for hair washing. The surgery sounds horrid. I'm kind of panicking about it, and trying NOT to panic about it, because ugh, what do I know? But it also sounds like everyone eventually gets the surgery. I'm just a little tiny bit protective of my skull and brain and wishing for something less scary and more treatable with like...eyedrops. :P 

Every time I get a new diagnosis I feel like my brain is falling into a million pieces for about a month, and it's all I can THINK about. I can't turn it off. I want rest from it. I want to be taken care of, comforted, and assured that everything will be fine. I want to not feel so scared and alone.

/Crazy Time

Enough of this pity party today! I thank God for PROJECTS...and for the daily have-to-dos at least for now, that propel me forward even if it is slowly.

Thursday, July 24, 2014

MRI'd to Sleep

This week I had my first ever MRI. I had just had a CT scan of my sinuses a few weeks prior, so I figured I'd be in and out quickly like I was with the CT scan, but I was wrong.

Why MRI?

Because of my persistently right-sided migraines, the ENT doctor sent a message to my primary care doctor recommending an MRI. The CT scan of my sinuses was unimpressive to him, revealing only a mucus-filled cyst (affectionately named Pete)...

From Mayo Clinic:

Magnetic resonance imaging (MRI) is a technique that uses a magnetic field and radio waves to create detailed images of the organs and tissues within your body.

 Getting Ready

 It's probably best if you plan ahead and take off any jewelry at home. I don't want to think about what would happen if you forgot about that tongue ring or something and went inside of a giant magnet, but I bet it isn't that fun. I went into a little dressing room and got into scrubs, which were gigantic, and put all jewelry, clothes, including undergarments into the locker. 

Are You Claustrophobic?

They asked me a number of times. I laid down on a table and they put a wedge under my knees. Then they had me put in ear plugs, and there was this cage-like thing for my head called a head coil, plus more ear coverings. They gave me a ball to squeeze if I needed anything and assured me they would be in constant contact with me. They also gave me a warm blanket and I went into the MRI machine head first, up to my legs I think.

She would get on the speaker and tell me how many minutes I had to hold still. Then it was like a fire or tornado alarm, a fairly loud alarm like beep plus pounding. For some reason I must have found this comforting, because I kept falling asleep. I also kept feeling like I needed to cough or swallow because that's just what happens when I'm told I have to keep still.

Contrast Dye

After a few of those sessions she said, "Okay now I'm going to come in and give you the contrast dye." I was alarmed because I didn't know I was getting contrast dye. Suddenly I wondered if I was deathly allergic and this was going to be it for me. She assured me that it was safe and that it would stay in my body for 24-48 hours, and that if I experienced any discomfort I should increase my fluid intake.

It was an IV in my arm and back into the MRI for more beeping, pounding and falling asleep. I thought I was going to be so nervous, but the truth is I was incredibly warm and comfortable in the enclosed space with all the beeping and banging.

The whole thing took a little over an hour.

Afterward I had a terrible, unrelenting headache for the rest of the day, but all in all it wasn't bad.

Monday, July 07, 2014

"I HEARD YOU HAVE LUPUS!"

It can and often does take several years to diagnose Lupus. I'm not in any hurry to be in poor enough health for that day to come. Dr. House says, IT'S NEVER LUPUS. It's not Lupus, right? Everyone knows that House MD is the most accurate medical show on television.

According to Mayo Clinic, common symptoms of Lupus include:
  • Fatigue and fever
  • Joint pain, stiffness and swelling
  • Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
  • Skin lesions that appear or worsen with sun exposure
  • Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Headaches, confusion, memory loss

 So do you just have bad allergies, or what?

All my life I thought I had allergies. I had itchy, gritty eyes, I'd get hives and other rashes, a sniffly nose, respiratory illness every summer. My gums were often irritated and ulcer-ridden. Sometimes they'd peel, and I switched my toothpaste many times in frustration. I'd been to the doctor complaining about allergies plenty of times, and they would tell me to take Benadryl, Zyrtec, Claritin (which didn't work) and prescribed Flonase nasal spray (which didn't work) and various inhalers.

Then one day, last year, I finally saw an allergist. He diagnosed my sinus infection and was sure I had seasonal allergies and food allergies. I had tests done on both arms and no reaction. I had blood tests. All negative...

Except one. The Anti-Nuclear Antibody test, or ANA. Now, according to the American College of Rheumatology, 3-15% of healthy individuals will have a positive ANA, so that alone isn't cause for too much alarm. My ANA titer was 1:320. The percentage of healthy adults with that level is more like 3.3%, so there's a little more cause for alarm.

I was to see a rheumatologist, and the wait was long–about four months.

My body reacts severely to mosquito bites.

In the mean-time I read everything I possibly could and and then burned out. I started to feel like I was going crazy waiting and not knowing what's going on. My eyes were in so much pain every day. My knees, hips, and shoulders were hurting and I used a heating pad on them every day. I had been diagnosed with rosacea years prior and wondered if that was a wrong diagnosis. My dental hygienist nagged me about my dry mouth and I wondered if that was part of it, too. I was at the dermatologist for folliculitis and itchy inflammation of the scalp, and continued to have chronic sinus issues. Was it all connected?

Heating and icing joints, medication on scalp rash and thinning hair...

When I finally saw the rheumatologist, I felt silly, since I wasn't in pain that day, but she was great about it. Listening to my symptoms and looking at my medical history, she definitely felt there was something going on and that even if they couldn't make an official diagnosis they could start treating some of the problems. I started taking Plaquenil in hopes that it would help some of my skin issues at the very least. It took 3-4 months to tell but it appears to be working well.

Plaquenil has a rare but serious side effect that causes loss of vision, so I had to get a baseline eye exam. The ophthalmologist confirmed my dry eyes and told me to use Systane eye drops and ointment, and suggested down the road I consider punctal plugs to conserve moisture.

Dry, irritated eyes

I went off of my antidepressants that were contributing to my dry eyes and mouth, and switched migraine medication.

The dermatologist and rheumatologist suggested that some of my skin sensations were due to peripheral neuropathy. The rheumatologist is going with Sjögren's Syndrome (SHOWgrins) for a diagnosis and she said they are still thinking Lupus or other connective tissue disease, but right now we just have to wait for more evidence.

I also suffer from a disturbance of sense of smell and taste and wondered if that was connected. My primary care doctor ordered a CT scan of my sinuses to see if I had an infection or tumor or anything else. They found a mucus filled cyst in my face but the ENT was unimpressed. He said, "SJÖGRENS is your problem, THAT'S what's causing the smell disturbance. If there's no moisture, you can't smell properly." Because of my migraines, the ENT and my primary care doctor agreed to order an MRI just in case there was something else going on.

What is Sjögren's? 

The Sjögren's Syndrome Foundation defines it as a chronic autoimmune disease in which a person’s white blood cells attack his or her moisture-producing glands.

Symptoms vary from person to person but may include:
  • a dry, gritty or burning sensation in the eyes
  • dry mouth
  • difficulty talking, chewing or swallowing
  • a sore or cracked tongue
  • dry or burning throat
  • dry or peeling lips
  • a change in taste or smell
  • increased dental decay
  • joint pain
  • vaginal and skin dryness
  • digestive problems
  • dry nose
  • fatigue
  Sexy, right?


There is always a bit of a rash on my face. It feels like sunburn but it isn't.

I'm supposed to wear protective hats and clothing, stay out of the sun during most of the day if possible, and always wear sunscreen, even when I'm inside. This is alright since going in the sun makes me feel like I have the flu, and I burn easily, and as far as exposing my body, I've always been rather shy. I'm glad I don't have to feel like a wuss about any of it now. Give me all the coverings!

It's a healthy glow, right?

I look a little sunburned all the time anyway.

I am very vain, and have taken great precautions against having bad skin, such as not drinking alcohol regularly, cutting back on caffeine, not using any soaps or cleansers, drinking LOTS of water, and obviously staying out of the sun. I also wear plenty of makeup, as it has sunscreen in it, creates a barrier that helps, and covers up the bad skin. You might think, "Life without alcohol, sunshine and coffee? That hardly seems worth living!" Do a google search of Lupus rash...

Do I have Lupus? Sometimes I think I don't have anything and it's all nonsense, but that's not reality. Some people with these kinds of diseases tell people "Lupus" because it's the only thing anyone's heard of. I want to be accurate when I talk about this journey so I will just say...just because they're "thinking Lupus" doesn't mean it IS Lupus, but it's something Lupus-ish, and my symptoms are my symptoms.

I have done a LOT of googling looking for other people who are going through this, and that's pretty much why I decided to write about it.