New Neurologist

Here is a perk of having a mother who works on the academic side of healthcare. When your first neurologist is a let-down, she can ask for recommendations and get real answers.

I didn’t choose my original neurologist. I wanted to get the earliest appointment possible, so I scheduled with the first available person. When I read her bio online, I was glad that it said she enjoyed confusing cases. Given the as-yet-unresolved nature of my progressive numbness, that’s what I wanted to hear!

At my first appointment with her, I lost some of that faith. She saw that I had recently started taking a B12 supplement, and said this could all be explained by a B12 deficiency. I find it hard to believe that a B12 deficiency would suddenly develop at the same exact time as my injuries. (And I’m not deficient in B12. It’s just low.) But she ordered tests, and I felt sure that the results would prove her wrong.

On February 18, I had the MRI of my brain, ordered to rule out MS. And some other MRIs, because getting imaging tests is what I do with my life now. That was a Monday. I didn’t hear anything back, so I assumed all was normal. I went about my life. That Friday, Feb 22, I had an appointment with my spine specialist. He is the one who told me about my abnormal MRI, if you recall.

He wondered why no one had called me. So did I, but I had other appointments with other doctors, so it’s not like I was up in arms about it. I assumed the MRI would be a fluke, everything would be fine, so I didn’t make a big deal. Then I went to my new pain doctor, and she also mentioned the brain MRI. Then I went to my PCP. She ordered a pituitary-specific MRI, as well as some blood tests. I read up on pituitary tumors, but thought, That’s ridiculous. Nothing that’s wrong with me is ever something REALLY wrong. I mean, I have three herniated discs, but none of them are bad enough for surgery.

Then I got the results of the second brain MRI. There actually is something there. It’s either a Rathke’s cleft cyst, or a microadenoma with blood products (whatever that means). I’ve had so many blood tests in the last two weeks that I know which nurses are bad at it, and I can feelĀ  my veins having panic attacks when they come toward me. My PCP told me to follow up with my neurologist.

My neurologist, of course, STILL had not called me. I guess she was planning to glance at my test results five minutes before my next follow-up appointment (which, by the way, she had scheduled for MAY). There was a whole kerfluffle wherein I cancelled my follow-up with her, explained exactly why, and then got a bunch of half-apologetic, half-”you’re so hard to get in touch with” voicemails in response. Suffice to say, you couldn’t pay me to go back to that doctor. I know I am lucky to even be able to make this decision, so it’s not one I make lightly.

My insurance company has a great website, which even allows me to view the reports from test results online, but they haven’t revamped the “Doctor search” function in quite some time. If I could pay $5 per month and search only for online dating matches with a certain body type, my healthcare premiums should buy me the ability to search by sub-specialty or unofficial “patients they see a lot of.”

This is where my mom’s profession comes in handy. Her awesome boss sent a few emails and was able to refer me to a doctor who has a lot of experience in this area. I’m glad I won’t have to be stuck with a doctor who can’t even look at test results. I do have to wait until the beginning of April for my appointment. That seems like a loooong time when I’m waiting for something like this. But, new neurologist! Yay!

Don’t worry about me, though. I’ll find a way to occupy myself. For instance, I’ve already got a new physical therapy appointment next week, and a pain doc follow-up after that. Oh, and I registered for a one-mile open water swim, which takes place at the end of June. So. I hope I don’t have to have brain surgery.

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The Only Running I Do Now

After two false alarms this winter, I’m pretty psyched to actually have the flu. I would prefer it didn’t coincide exactly with my Spring Break, but nevertheless, I’m glad to get it over with.

I’ve been feeling sort of sick for about six weeks. That’s typical of how I get the flu or a bad cold. When I came home from my night class last Tuesday, the official start of my Spring Break, I collapsed onto the couch. I felt like I’d been hit by a truck. Eventually, I dragged myself to the bathroom and guzzled some Theraflu, my cold/flu medicine of choice.

I spent the next two days lying on the couch, drinking water flavored with Nuun, an electrolyte supplement that I used to drink while running. A blogger I read once recommended drinking it while sick, and I have ever since. Plus, you know, it’s not like I have another use for my Nuun right now.

On Thursday morning, I had just sat down with a microwaved meal of some kind of rice with veggies and sauce (real, non-soup food!), when two Jehovah’s Witnesses knocked on the door. The front window blinds were open, so there was no sitting there and pretending I wasn’t home. Naturally, I jumped off the couch and dashed for the bathroom, the only first floor hiding place that isn’t visible from the window or door.

I must have tripped on my pajama pants, because I went tumbling to the ground. I fell forward, landing mostly on my left shoulder, that arm underneath me. I lay there for a moment, then realized that my legs were still visible from the window. I imagined the missionaries seeing me in distress and either calling the police or trying to break in to help me. My dog, already working to scare them off, would not have appreciated this.

So, after falling, hard on my shoulder and arm, I had to crawl out of sight to avoid a potentially embarrassing visit from police and paramedics. Somehow, only half my food spilled. What did fall mostly ended up all over me, not the carpet.

When my dog came back to clean up the small amount of rice that had spilled on the carpet, I was sure the porch was again empty. I resumed my place on the couch, this time with an ice pack strapped to my arm. My wrists were so red and painful, I’m actually surprised I didn’t break one or both. My brother once jumped off a swing at recess and broke both his wrists at the same time, so I know I don’t want to deal with that.

My shoulder is now killing me. Oddly, there’s no visible bruising. It just hurts really badly when I try to lift it, especially to the front or above 45 degrees to the side. I’m using it, so I won’t get frozen shoulder, and avoiding the most painful motions. Hopefully, the pain goes away within a week. I don’t need a shoulder problem on top of everything else!

No pics of this ridiculous experience, but here is my dog. Look at how he bravely takes on this duck.

No pics of this ridiculous experience, but here is my dog. Look at how he bravely takes on this duck.

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“It would be very, very small, and benign.”

I haven’t said anything about the MRI of my brain, because my neurologist has yet to call me back about it. But I will just say this, so it can turn out to be nothing, and we can all move on.

When my spine specialist talked to me about my lumbar and cervical spine MRIs last week, the first thing he said was, “I saw you had an MRI of your brain. Did anyone call you about that?” No. The report, as written by whoever interprets MRI results, states that the scan shows an apparent (small) brain bleed near my pituitary gland. He showed me the scan, and where the pituitary is, but he’s not a brain specialist, so that was basically it.

At the time, I was SUPER tired, so I didn’t react much. Then, on the way home, I wondered if this would explain why I’ve been having headaches since January. They feel like a giant is squeezing my head at the temples.

Of course, I consulted Dr. Google, and spent a total of about 10 hours reading various websites. What I read wasn’t terrifying, so I tried not to stress out about it. I still went out with my friend over the weekend, as planned. I simply wore my RoadID and said to her, as nonchalantly as possible, “Hey, nothing’s going to happen, but on the off chance, I have a very small brain bleed near my pituitary gland. You shouldn’t worry. I’ll be fine.” And on about our business we went.

Today, I checked in with my primary care doctor. She ordered another brain MRI, which will take place tomorrow (Wednesday). Since the pituitary gland is small, it’s difficult to get a detailed image of it within a full brain scan. I need to have an MRI that focuses on the pituitary gland.

Nothing else on here is identifying, right?

Nothing else on here is identifying, right?

The pituitary gland is about the size of a pea and is located at the base of the brain (which means behind your eyes. I KNOW it’s so weird that’s the base, right?). It’s part of the endocrine system, producing hormones that control a bunch of bodily functions, including metabolism, thyroid gland function, and blood pressure.

Up to 20% of the population has a pituitary tumor, and the vast majority of them are benign, or noncancerous. Most are less than 10mm! If necessary, they can be shrunk with radiation or removed via minimally invasive surgery that accesses the site through the nasal cavity.

I’m lucky to have health insurance, and to live in an area that affords me access to great medical care. If I do have one, and if I do need treatment, I’m sure everything will be fine. Oddly, while I like to make a BIG DEAL when I get the flu, I’m not very concerned about this.

I had a weird reaction to the MRI contrast last week, so I asked my mom to come with me on Wednesday, in case I can’t immediately drive myself home. I want to have someone there, but I also didn’t want to worry her. So I said, as nonchalantly as possible, “It’s not a big deal. I have to have another MRI. To see if I might have a tumor. It would be very, very small, and benign.”

I hope she’s not worried. It’ll be fine, and this will be a silly post.

 

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Mindy Kaling Went to My Pain Doc Appt With Me.

If you’re not watching The Mindy Project on FOX Tuesday nights, you need to reevaluate your priorities. I have class Tuesday nights, and I manage to catch up with On Demand. Dr. Mindy cares so much about my health, she made sure to be on the copy of WebMD magazine in my exam room.

This is some hardcore dedication to your fan base.

Hardcore dedication to your fan base.

In the last 3 weeks, I’ve had 5 MRI scans: lumbar spine (no contrast), cervical spine (1 with, 1 without contrast), and brain (1 with, 1 without contrast). The MRIs of my spine show that I have teeny, tiny, barely-there herniations of three discs: L4-L5, L5-S1, and C6-C7. But they’re not enough to be “significant,” definitely not surgical, and my doctor doesn’t consider them the likely source of my pain.

So, today, off I went to a pain management specialist. This is my third physical medicine & rehabilitation specialist. Her sub-specialty is pain management. I now have a bookmark folder called Doctors, and I’m becoming obsessed with sub-specialties and board certifications.

She also had a fellowship plaque!

She also had a fellowship plaque!

Verdict: Although my scans, the nerve conduction test, and the EMG all appear normal, she DOES have patients who have disc or nerve problems that just aren’t big enough to be picked up. I AM NOT THE ONLY ONE, AND IT IS TOTALLY POSSIBLE. She went to school for many years, so she knows. She mentioned it could be my L5 nerve root, based on where I have numbness.

She’s sending me for just a few sessions with a new physical therapist who specializes in sports medicine and sports injuries. Not a full course of PT, but basically an evaluation to further investigate the cause of my pain. I really liked her, and she seemed genuinely interested in finding what’s wrong and FIXING it.

I feel good after this appointment. It was nice that I didn’t have to convince her I’m not going to “just learn to live with it.” When doctors say that to me, I wonder if they realize they’re telling me to “live with it” for another 60+ years. No thank you!

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On Monday, We Wear Needles

I spent the equivalent of a full days’ work in the hospital on Monday. Hanging out, shuffling myself to various tests. You know, the usual.

A few weeks ago, I went to see a neurologist about my nerve issues. Even if my initial numbness in my right leg was caused by the herniated disc I had, it doesn’t seem to make sense that the numbness has progressed so much. The disc is supposed to be resolved. What gives, nerves?

The neurologist ordered a couple of tests to check things out, and I had both on Monday. First up was Electromyography, an EMG, and a nerve conduction study, which use electrodes and electronic stimulation to test nerve function. Each test took about 25 minutes. Neither was particularly enjoyable.

My nemesis.

My nemesis.

The technician for the nerve conduction study was very friendly, and explained everything that was happening so I wasn’t freaked out. He taped electrodes, tiny discs that detect electronic activity, to various places on my legs and feet. Each one was placed at a different point on whichever nerve/clump of nerves he was testing at the time.

Then, he used that two-pronged device you see in the picture to send three electronic signals through the nerve, starting very weak and getting stronger each time. Mostly it was just uncomfortable, but the last nerve on each leg has to be shocked until it burns out. That one was BAD.

Here's what nerve conduction test results look like. (Yes, I asked if I could take a pic for my blog. 21st century medicine!)

Here’s what nerve conduction test results look like. (Yes, I asked if I could take a pic for my blog. 21st century medicine!)

Next was the EMG. Well, next I waited for the doctor for such a long time that I took a nap, updated Facebook, and even went down the hall to the restroom. But THEN, the doctor arrived to do the EMG. Just like the tech, he was very friendly, explained everything, warned me before every needlestick, and asked me if I was OK everytime I sharply inhaled like a respiratory wince (many, many times.)

It wasn’t as bad as I’d imagined. My original orthopedic doctor recommended several months ago that I get one of these tests, but Dr. Google scared me away. I imagined doctors sticking multiple needles into my legs, all at once. In reality, it was one needle at a time. The needles went directly into the muscles, though, so it wasn’t that much better.

After sticking the needle into a muscle, the doctor maneuvered it around a bit. Then he asked me to move my foot or leg in certain ways. The machine buzzed and hummed, recording the level of nerve activity. On the first one, he asked me to bend my foot at the ankle. I did, and WOW did it hurt! After that, I performed the movements very carefully. I only had to take a break once.

“Are you OK?” he asked.

“Yeah… There’s a chance I might throw up. But probably not,” I said. “I felt like this during my steroid injections, and I didn’t throw up. It’s adrenaline.”

“OK.” It was nice that he didn’t find my matter-of-fact tone strange. Most medical professionals don’t take you seriously if you seem like you know what you’re talking about.

He did about 5 needlesticks on each leg. The worst was in my right foot. The second worst was the outside, upper part of my left calf. He did three sticks on that one, which made me think he had found something. Apparently not, though, as he then told me that the EMG readings seemed normal.

Look, bloody needle sticks!

Look, bloody needlestick marks!

Honestly, it’s disappointing to hear that at least the preliminary results of these tests seem normal. I let them stick needles in my muscles and shock my nerves, and they get nothing? I want an answer. The needle EMG was supposed to be able to detect a pinched nerve. That was the leading suspect.

I ended my day in the MRI. I was there for about two hours! Four MRIs: cervical spine and brain without contrast, then repeats with contrast. (Am I the only one who thinks the “cervical spine” should be the part nearest your cervix, not the farthest away?) I know it’s noisy in there, but I usually fall asleep in the MRI. This time I dozed on and off, instead of sleeping the whole time. I had some crazy dreams, which we will not discuss.

My IV for an MRI with contrast.

My IV for an MRI with contrast.

Here’s the only exciting thing about this MRI: It was the wider machine! I don’t have claustrophobia, but I do not enjoy tight spaces. If I’m going to spend almost two hours in a tube, I’m glad it doesn’t have to be super-tight.

Here’s the less exciting thing: While the cervical spine MRI was looking for a pinched nerve in the upper back, the brain MRI was looking for lesions that could be caused by Multiple Sclerosis, or MS. I probably don’t have that. The neurologist wants to rule it out as a precaution. My reflex responses in my arms were asymmetrical at my appointment. I don’t know if people with MS have asymmetrical reflex responses. But that happened.

So, we cross our fingers that one of these MRIs shows a pinched nerve. Then we cross our fingers that I won’t need surgery to correct it.

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So…These 10 Months May Have Been a Waste?

Last Friday, I showed up to what I thought was a follow-up appointment from my last steroid joint injection, which took place in early January. I don’t remember the specifics of setting this appointment. It was scheduled while I was lying face-down on a gurney, sipping gingerale and hoping I wouldn’t throw up.

The process of getting my most recent injection took longer, and was more painful, than it had been before. Afterwards, I was afraid to stand up too soon. Plus, I was in pain. They transferred me to a gurney, and wheeled me into a recovery area. I mainly remember laying there, feeling like I might puke from the adrenaline. I sipped gingerale and concentrated on my breathing. I wasn’t paying that much attention when the nurse scheduled my next visit.

When Friday rolled around, I was relieved. My nerve pain and numbness had only worsened since January. The pain in my joint hadn’t improved. After I explained this to the doctor, I was actually surprised that he was genuinely concerned. He had me do calf raises. He asked me to sit in a chair, then maneuvered my leg and foot to determine what positions triggered more numbness.

Finally, he entered notes in the computer and turned to me. “Do you want to have another injection today?” I paused. “I want the pain to stop. I want whatever will make that happen.” He didn’t pressure me to have the injection. This was surprising to me for two reasons. First, I haven’t seen many doctors who so easily question an existing diagnosis. Second, it meant he wasn’t getting paid for the procedure. Again, not something you see a lot of doctors pass up.

He checked my records and noticed that I hadn’t had an MRI of my lumbar spine since the initial injury last year. The nerve pain and numbness could be due to a new or worsened disc herniation. Specifically, a pinched nerve at S1 could mimic sacroiliac pain. In other words, it’s possible that I’ve been (sort of) misdiagnosed since June 2012. “Sort of” because I did, clearly, have a herniated disc in June. But, it may have gotten worse, or another one could have developed, and no one saw it because no new test was done.

Here’s my favorite part: I hadn’t had a new MRI since June because my insurance wouldn’t cover it. They said it was too soon to do a new one. An MRI costs about $1,000. It’s possible that instead of shelling out a mere $1K to check the progress of my back injury, they chose to cover a total of 6-months of physical therapy, an MRI of my foot, oral steroids, steroid injections, countless visits to multiple specialists, and one grand excursion to the ER. Maybe those were all the wrong treatments, and maybe they would have known that if they had just done the stupid MRI.

He ordered a new MRI of my lumbar spine to investigate the possibilities. I spent my Valentine Eve here:

MRI Reg at Mercy

You can’t take pictures of the machine itself. The magnet will wipe your phone or iPod, so I left mine safely tucked in my changing room locker. I just had this MRI yesterday, and I haven’t yet learned the results. Hopefully they will be my next post!

 

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Me and Doctors: A Love Story

When you have a complicated injury, you go to the doctor on a fairly regular basis. When that injury, and the associated pain, persists for 10 months, you see a lot of doctors.

Feb dr appt sch

Check out my dance card for February! Ok, so there’s a March 4 and a May follow-up thrown in. Still, you see my point. Doctors. A lot of them. One would logically assume that if I’m seeing all these doctors (only three of …five? are represented here), their combined medical education and experience should add up to a solution. False! So far!

Sometimes I feel like my five(?) doctors are an extended set of divorced parents. None of these doctors are ever in the same room at the same time, certainly not looking at me or my records at the same time. They don’t talk to each other. Instead, they share custody of me, and I run around trying to accurately relay what each one said. Oh, and toss a couple of physical therapists into the mix, each with their own opinions and different educational foci. It becomes exhausting after a while.

The exhaustion can sometimes lead to misunderstandings. You may notice that I had an appointment on Friday, Feb. 8. This appointment was such a misunderstanding. Next time, I’ll write about how I showed up at a follow-up appointment that was actually another giant needle appointment. TGIF, I think not.

 

 

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