The one where I play House, MD. (and it doesn't go well)

Throughout the past few years, while I've been fighting the mystery illness, the only doctor I've felt has been on my side has been my psychiatrist.

I find it ironic that the only physician to advocate a physiological explanation for my symptoms is my psychiatrist, while the internal medicine specialists have brushed me off and made me feel like:

a) a hypochondriac
b) a malingerer
c) suffering from a conversion disorder,
d) I'm wasting their time.

So it pains me that during my last appointment with the doctor I trust the most, I pushed too far and took his comments way too personally.

I've been feeling a lot better since my thyroid medication was increased, but still, not well enough to return to school or even go for a long walk.

I am frustrated beyond belief and have made it my mission to diagnose myself. You see, my thinking is that if I don't do the legwork, and something gets missed, I'm the one who will live with the consequences.

It's not good enough for me to know that my thyroid is suddenly tanking again. I want to know "Why??"

With my ANA still sitting at a hard-to-brush-off 1:640, I am looking for clues to what's going on in my body.

I've been told the most likely culprit is Hashimoto's, but a test of thyroid auto-antibodies came back negative.

So I asked if there was any chance my symptoms could be pituitary. I've looked into adult growth hormone deficiency and the symptoms all fit. Apparently, a 2007 study found that people with thyroid disorders have a reasonable chance of having anti-pituitary antibodies.

This theory would describe my high positive ANA and the symptoms of crushing fatigue and periodic depression.

So when he looked at me warily and told me I was taking this too far, I felt like I was losing my only ally.

After seeing tears start bursting from me, he told me that he would look into my theory with a growth hormone test (but not the stimulation test; which I understand is the 'gold standard). He promised he would stick with me, but I feel like I've pushed the relationship too far by coming up with a far-out medical hypothesis.

He assured me that such a disorder would be very rare. But then again, I argued, so is WPW, so is Factor V Leiden, so is Malignant Hyperthermia - but being rare hasn't stopped me before from being diagnosed with some uncommon disorders.

The appointment ended with me in tears and him looking frustrated and saddened. I'm not sure where to go from here.

Do I apologize?
Do I send him a card and thank him for his support?
Do I just wait until my next appointment and bring it up then?

I feel alone on this journey and I'm afraid I've lost the support of the only doctor willing to travel it along with me.

The Great Lyme Debate

Over the past few years, I have considered the possibility of Lyme disease (LD) as the cause of my problems. Fatigue, body aches, sweats...all come with Lyme territory.

The other night I watched an episode of "Mystery ER" (lame, I know...) and saw the story of a woman with exactly my symptoms. I watched riveted - is it possible that this could be what's wrong with me?

After years of losing her life to feeling chronically awful and being diagnosed with depression, the woman on the TV show was finally diagnosed with chronic lyme disease and was treated with intravenous antibiotics...by the end of the episode, she had fully recovered.

Before I was sick I spent a lot of time in the woods hiking and rock climbing. There were plenty of opportunities for a tick to get attached to me, although I don't remember ever seeing one. To date, I've been tested twice and found to have a negative ELISA. That should be the end of the story, but is it?

A recent Canadian headline told of 13 people who were tested for Lyme Disease (LD), for whom the results were Interpreted Incorrectly. This is no doubt a black mark on the Winnipeg testing service, but probably not much for the average person to worry about.

What may be of more interest to the public is the possibility that there are thousands of misdiagnosed cases of LD, cases not found because of faulty testing and a resistance in the medical community towards the idea of a chronic LD. ( A study of Connecticut doctors found that only 2% believed in the existence of chronic lyme disease and provided treatment).

Lyme Disease, in its early stages is well recognized as a valid diagnosis. However, there is disagreement about the reliability of the tests (which are performed in Canada by government laboratories). And disagreement about the validity of the disease itself (see Proof That Chronic Lyme Disease Exists, 2010)

Using the CDC criteria, Canada uses a two-step process that begins with a screening ELISA, which, if positive, is followed by the Western Blot. A 2010 literature review found that "Due to B. burgdorferi strain variation and other factors (see following sections), the ELISA for LD has only about 50% sensitivity". Further, a 2010 Slovakian study found that that all of the 32 patients in their study "had specific antiborrelial antibodies confirmed by using the western blot in spite of negative ELISA"

I was particularly interested to learn that one study found a link between a positive ANA and LD, saying, "Patients with disseminated LD often have positive antinuclear antibody tests with titers as high as 1:640". Hmmm...Sound familiar?

On one side of the fence, there are patient advocacy groups who believe that LD is under-diagnosed and under-reported. They guard in secrecy the list of "Lyme Literate" physicians, lest those doctors be censured by their medical colleges.

On the other side are the physicians; left to make sense of patient's vague symptoms in the absence of clear diagnostic tests.

From my perspective, there are some serious questions about LD that Canadians need to be be asking.

• If chronic LD is a real entity, shouldn't we be able to test for it conclusively?
• If ELISA is unreliable, then why are we using it? Why can't Canadian patients request (or self-pay) for the superior Western Blot test?
• Are the risks of antibiotic treatment so high that they truly outweigh giving self-diagnosed patients the benefit of the doubt?

If the medical community itself can't figure this one out, what hope do patients have of making sense of this issue?

And still, the "what if" questions haunt me...

• What if my illness is treatable?
• What if I don't always have to live this way?
• What if this could be treated, but no one ever finds it?

Do I believe the ELISA? Or do I head to the USA for tests that the CDC tell me might be offered by unscrupulous labs?

*sigh...*

An 'overnight' cure?

I saw another doctor yesterday. This time an ENT.

I told him about the headaches, the brain fog, the sleepiness, fatigue...and the constant pain around my eyes (sinus area).

He said my sinuses looked great on my recent MRI (I love electronic health records). And then he asked me if I have ever been evaluated for obstructive sleep apnea. Apparently, it could account for ALL of my symptoms.

Sleep Apnea? Wow. What if everything I've been going through could be explained? And treated easily? What if the past four years of my life were a bad dream?

The only hesitation is that I don't have the typical risk factors associated with OSA. I am not overweight, not male, and DH has never complained about me snoring...Still...my sleep study is scheduled in two months.

I hate to get my hopes up, but if this is "it", I will be eternally grateful.

Test Results...

For you wonderful folks who follow this blog, I'm sorry to have left you hanging on the outcome of my last doctor's appointment. The results are in and....

-drum roll-

*MRI was negative for demyelination = not MS.

I know I should be over the moon that I don't have MS, (and believe me, I really am happy not to have it), but that leaves me with No Diagnosis.

Or worse, the non-diagnosis of Fibromylagia - (which apparently means I am a bat-shit crazy with a personality disorder)

I couldn't write about this for a few days, because I mostly feel defeated. I feel ashamed of being sick with no objective indication of illness. I feel dismissed.

I don't know where to turn next. Do I just give up? Is this the way life is going to be forever?

Thanks to God for my wonderful husband (who loves me no matter how I wake up feeling each day), for my friends (who stick by me even when I cancel plans with great frequency), and for my mom (who checks in on me everyday hoping for good news...and buys me groceries when I am too ill to leave the house). I don't know how I would have survived the past few years without you all to count on.

* Actually, the reason the doctor didn't want to share the report in advance of our meeting was due to what she calls an 'incidental finding' of my cerebellar tonsils (WTF??) being 4mm longer than they should be. Apparently this is not something I should worry about. Who knew there were tonsils in the brain?

Results Day

I am meeting with my specialist this afternoon to learn the results of the MRI and I am nervous.

At this point, I don't know which scares me more: actually getting a diagnosis or no diagnosis at all?

This will be my third specialist opinion. When I first met this physician, she asked me if all the tests came back negative, would I accept that there is "no diagnosis"? Or accept a diagnosis of "fibromyalgia"?

Not a chance.

I've read too many accounts of missed diagnosis to give up.

In fact, the first specialist I consulted missed my diagnosis of hypothyroidism. If I had taken her word that there was nothing wrong with me, I wouldn't be in school today.

Then again, it could be MS.

Either way, I wish it wish I knew in advance what to expect.

My Mom: Migraine or Stroke?

My mother is nothing like me - she's healthy and active, absolutely full of life (at age 70, she is averaging about 7,000 steps a day on her pedometer!), so it was unusual to get an emergency phone call regarding her health.

It started with her having a terrible headache behind her eye. Next came a feeling of extreme heat followed by difficulty speaking (she thought that she was making sense, but what came out of her mouth were just random words). Aphasia.

My first thought was stroke, so we rushed her to the hospital for evaluation. As I took her into the waiting room, I noticed that she was making sense...sort of...but using strange words and trailing off mid-sentence, forgetting what she had just been telling me.

Fortunately, a CT scan showed no signs of stroke. Unfortunately, there was no way to fully rule out a TIA (also known as mini-stroke).

Here's where it gets weird: my mother has a history of hemiplegic migraines that began about two years ago. These strange migraines look almost identical to a stroke. During the migraine, she loses feeling and control over half her body.

The first few times it happened, even the ER physicians thought she was having TIAs; but after a neurologist confirmed that it was an atypical presentation of migraine, we all got used to it and quit worrying when symptoms came over her.

This time was different, there was no aura, no numbness, no loss of control over one side of her body - only pain and aphasia.

We are waiting on another consult to re-evaluate, but at the moment, my money is on migraine.

Bizarre symptom of rare disorder? Maybe my mother and I are more alike than I thought.

Could it be MS?

I saw my third internal medicine specialist this week. My PCP, prompted by my recent high ANA level, decided my case was worthy of another look.

After taking a detailed history, the specialist told me that she didn't think my symptoms sounded like lupus, she said they made her consider MS.

Holy crap.

I have only known two people with MS, one spent two decades in a nursing home, the other spent most of her life in a wheelchair. That is scary, scary stuff.

Still, whatever is wrong with me is what it is. Discovering it -naming it - isn't going to make it worse.

Of course, she may come back with Chronic Fatigue Syndrome, which is just as good as Fibromyalgia for ensuring that you will be laughed out of most doctor's offices, and have eye rolls going behind your back.

The power of diagnosis. I wonder if physicians appreciate how much rests on having a name, a reason other than 'all in your head' to explain why you aren't fully participating in life?

a plea to my doctors

I am trying my best to get to the bottom of my symptoms, but I can't do it myself. I need you. I'm pleading with you:

• Please help me find out what's wrong with me. I miss being able to work, study and rock climb. I miss going out with friends for dinner and drinks on Friday nights. I miss my old life. Something happened between then and now - help me find out what happened.

• Please don't tell me that I need to learn to live with my symptoms. I am doing my best to cope, but until you can tell me what's wrong with me, I don't want to believe I will feel this way forever.

• Please don't get annoyed that I ask for copies of my lab reports and ask you questions about flagged lab values. I am a curious person, desperate to find an answer. To you these questions are an annoyance, for me - this is my life slipping away.

• Please don't patronize me. If you have something to say, please say it to me in person - not in your follow up report to my PCP.

I need you more than you can know. Please don't give up on me.

Is a 1:640 ANA titre meaningful?

When I first started feeling ill, my psychiatrist wondered if I might have Lupus.

While my mood responded to antidepressants; the constant fatigue, fevers, chills, migraines and brain fog led him to think that there was more going on than a psychiatric issue.

He tested my ANA and found it positive 1:160

Referred to Rheumatologist. Disaster. She didn't want to test me further because I was a psychiatric referral. Depression causes fatigue, therefore I had a mental health issue and was waisting her time.

My new family doctor wondered about my ANA and re-tested it. It had increased to 1:320

Referred to an Internal Medicine Specialist. She ran a panel of autoimmune tests which came back negative. She diagnosed me with Fibromyalgia and told me my ANA wasn't meaningful.

Fast forward - one year later. I am feeling quite a bit better, but fatigue and headaches, brain fog still happen with alarming regularity. Often I'm fine on a brisk walk, can lift heavy objects without breaking a sweat...and then suddenly... I find myself short of breath doing the simplest of things. Anything physical or emotional stress comes at a cost. A busy day-trip to Detroit with my mother led to a three day sleep, with fever and aches.

But my mood is fine!

My psychiatrist is still not happy with my physical symptoms, and still doesn't believe that they are related to depression. He did another ANA last week which found a titre of 1:640 (Speckled).

He is puzzled by this, as a year ago, I tested negative for anti-thyroid antibodies, anti-phospholipid antibodies, anti-Sm, anti-Ro, anti-DNA....

Clearly, something is still wrong with me. Is a 1:640 titre important? I keep feeling like there is something else going on in my body, but running out of directions.

The "F" Word

Fibromyalgia.

I saw an Internist yesterday about why I don't seem to ever feel 100% well. After reviewing my symptoms (constant low-grade fever, feeling flu-like ever few weeks, horrible fatigue), she mentioned that some of my concerns sounded like fibromyalgia.

I worry that if I get stuck with the "f"-word, it will undermine my efforts to find out what really is wrong with me. My main issue isn't muscle pain; it is fatigue and flu-like illness.

The thing is, I know my body. I know what it feels like to be healthy and active. I reject the chronic disease label. I don't want to give up hope and just learn to live like this.

Fortunately, this Internist is willing to keep working with me to find the source of my problem. Next stop: endocrinology. Possible future step: infectious disease.

*I do believe that Fibromyalgia exists. I just don't think that I have it.

TSH Range - The Saga

How hard can it possibly be to diagnose hypothyroidism? Let me share with you my journey...

Primary Care Physician:
1. Patient books appointment with family doctor to discuss weight gain, heart palpitations & fatigue.
2. Doctor orders TSH test
3. Doctor tells patient that their TSH is within the "normal range" of 0.5 - 5.0 (no mention that TSH has changed from 1.9 to 4.8 since last test
Opinion: advises another TSH test in three months to monitor.

Cranky Internal Medicine Specialist:
1. Meet with patient, treat with skepticism.
2. Decide that a patient with a diagnosis of depression cannot have anything else wrong with them.
3. Note that lab results of TSH at 6.2 are "slightly elevated", but no cause for concern.
Opinion: Patient has history of depression. Depression causes fatigue and weight gain. Refer back to referring psychiatrist.

Private Health Care Physician:
1. Patient presents with weight gain, relentless fatigue, feels lousy.
2. Doctor orders TSH test.
3. Doctor notes that TSH is 8.3
Opinion: Notes that new TSH range is 0.3 to 3.0 - treat immediately, ideal is to be as close to 1.0 as possible

Specialist (Psychiatry)
1. Reviews lab results from Private Doctor
2. Disagrees with the new TSH reference range, but notes that people with depression seem particularly sensitive to thyroid fluctuations.
Opinion: Treat - but not as aggressively as suggested by Private Physician.

Much Nicer Internal Medicine Specialist
1. Reviews previous lab tests.
2. Asks why previous Internist didn't treat thyroid.
3. Suggests that reference ranges are not particularly meaningful, and that one should treat the patient, not the lab result.
Opinion: Thyroid fluctuation could have been my issue long before my TSH started to change. Thyroid is under-diagnosed. Treat aggressively.

Five doctors, four perspectives, two reference ranges, two "wait & see", three "treat", two "aggressively", one "conservatively".

This just shouldn't have been so difficult.

i'm back!

Great news! My test results are back and I do not seem to have an autoimmune disease.

After a two-hour evaluation in the 'big city' nearby, the mood disorder specialist agreed with my psychiatrist that I am a "difficult diagnosis". I have no history of mania, but never really respond to antidepressants fully. Unipolar depression? Bipolar? Not depression at all? My main issue is fatigue, but hard to tell if it is physical or mood related. Great.

And so, my next stop is a date with Adderall or Modafinal. I really don't care what they put me on if it gets me out of bed and moving around again.

I've decided that my goal this summer is to run a 5 km race. This should be interesting as I am currently struggling to walk 20 minutes with my dogs without sitting down to rest. But hey, it's good to have a goal.

I've been remembering all of the things that used to be part of my life - playing in a punk rock band, rock climbing, traveling (and seeing more than just the hotel room). It is time to get my life back.

Today I am going to hit the treadmill and try to run/walk for a few minutes.

Here I go!!

the joys of anonymity

One of the aspects of being a patient that many take for granted is their relative anonymity.

In many Canadian provinces, we work in a health "system", which means that in any one geographic area (around 1 million pop) all of the hospitals, long-term care facilities, health service providers, mental health & often public health services are part of the same organization. One organization I worked for had over 20,000 employees.

For patients, this can mean more integrated care, consistent policies & electronic record sharing - kind of like a restaurant chain - you know what you are getting, no matter where you access service.

The downside I have learned happens when you (as a professional) become a patient in your system. Having worked with the vast majority of department directors, managers, vice-presidents, medical officers of health, and specialist physicians, I don't can't just "blend in", I am not invisible.

No matter which site I go to for care, there is a good chance that I am going to run into a colleague. The thought of having to explain my miscarriage, depression, overall illness, resignation and entry in to the PhD program is more than I want to get into with most people. To be candid, I feel like I failed, in that I could no longer keep up with my work demands during the worst of my illness.

Next week I am going to be seeing a specialist in a city about two hours from my home. It's going to be nice to be where nobody knows my name.

don't worry, it's just a little atrophy...

If your head CT report concluded:

"mild frontal atrophy"..."perhaps related to condition" (what condition?), would you feel concerned?

Apparently not, according to my new internist.

Good news, I suppose, but still...brain and atrophy aren't words I want in the same sentence!

questionable advice

I know that my friends are well meaning and have nothing but my best interest at heart. However, I have been a little surprised lately by some of the suggestions I've received from them about my health.

Here are some recent ailments that I have been advised of:

• Adrenal Fatigue - although my levels are well within normal, I am told that "western" medicine lab tests are not sensitive enough to pick up on this ailment. The treatment? Lots of rest and bovine adrenal supplements. Is it just me or does this sound like a really bad idea?

• Candida (yeast overgrowth) - I am the first to admit that a yeast infection is nasty, nasty, nasty! I am totally behind a good anti-fungal treatment when warranted. But the idea that candida is growing throughout my body, raging through my innards just doesn't resonate with me. Unless one's immune system is severely compromised, I think we can tick this one off the chart.

• Wheat Allergy - despite having been tested for celiac (twice), there are still friends of mine insisting that I must have a wheat allergy. This one isn't totally off-the-wall, there are real cases of wheat allergies, but living a wheat-free lifestyle is hard work. At least it doesn't involve eating cow glands, so I suppose this one is at least a possibility.

I will be the first to admit that modern "Western" medicine doesn't have all the answers. It is tempting sometimes to want another perspective, another option on the table.

I suppose I just like to stick to things that I can research in peer-reviewed journals. Am I being too closed-minded?

my titers (or lupus part II)

I just got my lab results in hard copy. I thought I would post them to see if any of you can make more sense of them than I can:

ANA: Positive

TITRE: 1:160

PATTERN: Homogeneous pattern

Speckled pattern

another piece of the puzzle?

A few weeks ago, I was driving to class when I started noticing a pain in my right rib just under my breast. Over the next few days the pain got more and more miserable. It hurt to breath, it hurt to sniffle, it hurt to sit, it hurt to lie down.

I started popping extra strength Ibuprofen, and decided to visit my massage therapist to see if it was being caused by muscle pain. He evaluated my pain and pressed lightly on my sternum. HOLY FRIG it hurt!

For the life of me, I could not remember hurting myself. I mean, if you hurt so badly you can hardly sit or stand, wouldn't you have some idea what you did? Sleepwalking? Too much arm waving with the Wii?

His best guess is that I was suffering from a condition called "costochronditis."

It's been about a month now and I am starting to feel better, but interestingly, I was just "googling" it, and it looks like it has some relationship to autoimmune diseases. Perhaps the whole autoimmune theory isn't as crazy as I thought.

lupus?

My test results are back. It appears that they are all normal, except for one.

I tested positive for high anti-nuclear antibody (ANA). It seems that can happen in about 20% of the population for no good reason, so I may not have Lupus. But considering my symptoms, there is a good chance that I do have it.

My doctor's office is seeing me tomorrow morning for follow up.

I feel a ray of hope shining in. Maybe I will finally know what's been wrong with me for so long.

could it be possible?

What if the depression I've been struggling with isn't depression at all?

Here's what happened: I shouldn't have worried about being "too well" for Friday's appointment with my psychiatrist. As it turns out, I crashed that morning and was barely able to drag my carcass across the city to see him.

He listened to my story of how things have been for me since Christmas, and seemed very perplexed. Thankfully, My Husband was able to attend this appointment with me, and was able to give some additional insight about my moods.

My doctor is concerned that I have not responded to any of the multiple treatments I've had over the past few years and that my physical health is worsening along with my moods shifting more rapidly.

I could care less about my moods; what I can't stand is the fatigue. The overwhelming energy it takes to get out of bed and make a pot of tea. The fact that I avoid showering day after day and have been wearing the same pajamas now since Friday morning. This is not me! After three good days, I feel like I have crashed. Sometimes I wonder if I have chronic fatigue (and depression?)

After my brief reprieve earlier this week from brain fog, it has set in again and made focusing on anything next to impossible. All I want to do is sleep.

Interestingly, my doctor is now wondering if there is something physical going on with my body that he hasn't picked up on.

So here are his recommendations:

1. Consultation with another psychiatry specialist - (thought I was already seeing a specialist? how much more specialized can you get in mental health?)
   
2. Testing for Lupus, Celiac, hormone levels, and a whole host of "outlier" illnesses.
3. Tapering off two of my medications over the next ten days to see if any of them are causing the fog & fatigue.

I am very frightened of coming off medication. I've done it before and things got much worse without it. But I am grateful that he is still trying to solve the mystery of my downward spiral of health.

It is such a crazy thought after all I have been through that it's possible that none of this has been depression, but rather some strange autoimmune disorder. If you've been here, you can probably understand if I share with you that I would be grateful for a diagnosis that is physical in nature. Something objective that I could show to people and that they would be nice about.

I guess I will just have to wait and see what happens. Today was my first day of tapering off of Cipralex and Wellbutrin. I feel dizzy, sleepy, teary. I think this is normal, so I am going to find my sweet little furry friends and bring them to bed with me now. Everything always feels better when there is a soft, warm, fluffy ball purring next to me.

good news, or bad?

Three days. Three beautiful, blissful days of peace. My fog lifted for three days and I was able to:

• wake up
• read
• think
• smile
• call a friend
• have a shower
• play with my puppy
• clean the house
• feel joy
• stay awake for 12 hours
• remember how wonderful life can be

This would normally be great news, fantastic news; except that tomorrow I see my doctor for a medication review. The last time I saw him was before Christmas.

The past three days have been so out of character from the past two months, I'm afraid that he is going to get the wrong idea about how I have been doing.

On the other hand, maybe I am doing better. I just hate to get my hopes up as my history has shown these brief windows of wellness that ultimately crash back down again.

How do I portray how bad things have been when it is all I can do to stop myself from beaming, glowing with joy that I finally feeling well again?