At this point, it looks very likely that I have one of two diagnoses – either dysautonomia/POTS (most likely), or narcolepsy (less likely but a real possibility). Doctors are testing for both, and it will probably take a few months before I know for sure.
Generally, I figure out what’s wrong before my specialists do. Sad, but true. After all, I take great responsibility for my healthcare and I am not afraid to hit the medical journals online or in the medical library and dive in head first in search for answers to the array of baffling symptoms I’ve survived for the last decade plus. I’m a problem solver by nature, and I have many problems to be solved. While I hate being sick, I do sometimes enjoy the complex challenge of figuring out what is wrong (I shouldn’t say that too loud – someone may accuse me of Muchausen syndrome). Doctors can criticize me all they want for my googling and “self-diagnosing”…but they can’t argue with history – I’m right about 8 out of 10 times, which is a whole lot better than their ratios! I’ve been right about Gluten Intolerance, Gluten Ataxia, SIBO – well I thought that was Candida which also is an infection of the GI tract and which responds to a low carbohydrate diet so I guess you would say I was very close, right about CRPS/RSD (sure wish I wasn’t), and a few others along the way.
God has frequently lead me again and again using the intuition and problem solving abilities He has given me. I’m most grateful for both and I use them daily to survive! Without God’s leading, I often would not have tried drastic treatments which greatly improved my circumstances. Examples would be the specialized and radical, if not fanatical, diet I’ve been on for 1.5 years which I feel has saved my life…or taking my legs out of the casts I was in to try to increase my weight bearing and movement because my intuition told me I wasn’t getting any better from the suspected fracture despite casting and rest, and I needed to move or I’d get worse, which increased my suspicion that I had CRPS/RSD. I was in a mental hospital in 2009 before God showed me that I NEEDED to be gluten free, but He did show me and I started eating gluten free from that moment on (a year before my diagnosis came), and it too saved my life; I’m fully convinced that I was dying and nobody saw it but me and my very close friends.
The reason I don’t think my “self-diagnosing” is a problem is because I’m not actually diagnosing; I’m hypothesizing, theorizing, using my noggin’ to connect the dots and details (what I’m best at) because I’ve rarely had doctors who were willing to expend their own neurons doing it for/with me. I do not accept a diagnosis as fact until it is proven. I may think that’s what I have going on…but until it’s been confirmed, I’ll play devil’s advocate back and forth, thinking critically, until I know for sure because my specialist tells me so one way or the other. Now, if I was actually diagnosing myself and adding such self-diagnoses to my own medical record (which would be lying) then YES, that WOULD be a problem and I’d need some serious help. I recognize the line of differentiation between the two scenarios.
More recently, I’ve continued to use my problem solving and intuition skills in figuring out what is wrong with me.
I had mentioned the possibility of narcolepsy to a friend just a few weeks before my sleep neurologist brought it up during the evaluation. I was trying to figure out why I have such terrifying hypnagogic and hypnopompic hallucinations and sleep paralysis. No doctors have ever given me answers regarding this, though we’ve come across some interesting theories. Theory 1: SSRI’s cause me to become psychotic, so this caused me to question the levels of specific neurotransmitters in my brain and body…surely for such small doses of several different common (and generally considered “safe”) SSRI’s to affect me so strongly, there had to be an underlying imbalance in my body’s production of neurotransmitters. Where are neurotransmitters created? In just the last 10 years, researchers learned that while some are produced in the brain, many more are primarily produced in the gut, especially in the case of Serotonin. I hit the medical library. Come to find out, people who have motility problems often also have altered levels of serotonin and it’s hypothesized that the creation and/or transportation of these neurotransmitters is less effective in a damaged or poorly functioning GI tract. This would also explain why when my gut gets disturbed, I tend to also hallucinate much more. Here is a fascinating article related to this topic, written in a way most people would understand. Theory 2: This theory, courtesy of my GI doctor, suspects the psychosis and hallucinations are a manifestation of the high levels of pain my body is trying to cope with daily. Theory 3: Through researching I had learned that these problems were also common in narcolepsy, so I told my friend about it, curious to know if anyone else had it. My friend said she knew narcoleptics and she didn’t think I fit the bill, so I put that diagnosis on the back burner, but not entirely out of sight or mind. I didn’t mention any suspicions to the sleep neuro, however (and I was really hesitant to mention my mental health history at all – I didn’t want to raise any red flags). In fact, I didn’t at all expect that she would mention it herself! Yet she ended up giving me a brochure on it. So perhaps I was on the right track after all.
The dysautonomia? I’ve known for several years now that my autonomic nervous system was somewhat wonky, but never knew of a specific diagnosis that could categorize all my unsolved mysteries. I began searching to find out what new “blessings” CRPS could bring. In other words, some diseases predispose their owners to developing other diseases, often within the same categories. So having one type of cancer may predispose you to getting other types of cancer. Having one heart disease may lead you to developing other cardiovascular diseases. Having CRPS, or a neurological disease with autoimmune properties, may predispose me to also develop other neurological and autoimmune diseases – and I already possess quite a few others, which only further predispose me to more. I found out that CRPS was related to dysautonomia and that dysautonomia may explain my frequent symptoms of pre-syncope (feeling like I am going to pass out). Well, I decided to bring my list of “really weird problems/symptoms” to Dr. Z, my awesome pain management doctor, and to see if she could put the pieces together. When I have a suspicion, however, I try not to come right out and say, “I think I might have ______ disease” because doctors have egos and if you bruise their egos, they often take it out on the patient. So while I didn’t directly come out and tell her what I thought was going on, I presented my symptoms and she said that autonomic dysregulation was a common complaint of people who have my collection of diseases.
So we’re still waiting to see if my hunches are right. The interesting thing to me is that I’m out of ideas or alternate guesses. If *I* cannot come up with alternative possibilities, I’m not sure how many more there can really be. I’m quite serious. I’ve sorted through my own list of differential diagnoses and have been able to more or less rule out (very rudimentarily, I’ll admit) most of them.
The answer is simpler (and a little less crazy) than some folks would expect. It’s because I want a cure and/or relief of my pain and physical suffering. But to obtain treatment which leads to a cure or relief, one must first know what is being treated – a diagnosis is required. Treating cancer with an antibiotic just isn’t gonna cut it, you know? So in an effort to obtain that relief, I must get past the first step of identifying the specific malady.
I learned a few years ago that nobody will care more about my health than I do, and I cannot expect them to. I’m my own best advocate and likely the only advocate motivated enough not to give up after repeated failure. Naturally, persistent pain is a very good motivator urging me to continue searching for a cure when nobody else will help me. *I* am the one who can make the lifestyle changes and do all the hard work to maintain and/or achieve health. Nobody is going to spoon feed me the answers nor the cures. The hard work is between me and God.
God has given me the specific tools – intuition and problem solving – for the task. Add a dump truck worth of strong will and stubbornness, a heap of self-control, and eight shakes of determination to the previous, and it’s obvious that God made and prepared me for this very challenge. He specifically designed the challenge for *me* and *me* for the *challenge*.
I’d love to one day use these abilities for more creative, constructive and others-focused tasks. When telling a new friend of my interests, I explained that some of my favorite hobbies include building computers for people who have disabilities, fixing things including computers but almost anything (except the old stapler I launched across my office in frustration yesterday when it jammed for the 6th time in a week and I’d already spent 2 hours surgically removing the jammed staples and finding paper clips inadequate for the task…then I went to WalMart and just bought a new one that claims to be “jam free”!), creating music and playing my instruments (which has involved years of determined practice and an unwillingness to stop until I got it “right”), writing, helping other people, etc. Many of these hobbies I enjoy require creativity, problem solving, intuition, determination, self-control, and a good dousing of stubbornness required to keep going till I get it right. Hopefully one day I’ll be able to use my gifts more fully in these ways. Yet for now, I will do what is necessary for survival, researching my way to diagnoses which may lead to effective treatments and symptom relief…while I also hold onto hope for a better tomorrow.
For that matter, I think that the researching is one way of holding onto a bit of hope that can help keep me going. If I resigned and said, “There’s no hope I’ll feel better tomorrow; it’s just going to suck and I know it, so I’m not going to bother anymore. I give up, and I’m not going to spend the effort on trying to get healthier,” the result would be pretty icky; I think I might just crumble emotionally. I’m the owner of a type A++ personality, I’m often a perfectionist to my own detriment (but most others’ benefit I suppose?), and I don’t easily give up on much of anything I set my mind on doing or trying. I’m an all-or-nothing person, so either I’m going to “get busy living, or get busy dying” (my favorite line from The Shawshank Redemption…not a movie for kids). And giving up on a diagnosis which may lead to a cure or relief smells a lot like “getting busy dying” to me.
Certainly when Christ returns or I fly to Jesus, every problem I had or thought I had will be solved in that blessed instant. Boy that’s a good thought, isn’t it?
I do go through seasons where I suppose I’m just so worn out from all the brainy work and research that I just cannot look at another research paper without increased nausea. At other times I have doctors who are really on-the-ball and I trust their expertise to lead this ship in the right direction without my subliminal prodding. 🙂 That’s rare but such a wonderful thing when it does happen because I can “sit back and relax” a little bit mentally. Lately I’ve felt so totally overwhelmed by everything that I’ve just left some of the decisions up to my doctors without doing as much research. For example, I usually like to know the risks of medications before I agree to take them since I tend to have such strong and dangerous adverse drug reactions. Lately, I’m more or less just trusting Dr. Z to help me with that and I’m not googling to learn more (I probably wouldn’t try some of those meds if I did know the potential reactions/side effects they could cause!) unless I suspect they may slow my motility. Sometimes I just don’t want to know what else is wrong. I already have so much to juggle without any additions.
And then there are the (often short) seasons where things have settled down between falling anvils and I am able to enjoy more of my hobbies and activities that don’t involve healthcare (AMEN!). During these times I’m purely happy to leave the research in the dust. I want nothing more than to be or feel normal, though I know that’s not likely to happen the way I fantasize and I still must care for my health, diet, and avoid those things which can make me feel worse or flare. You can bet during these times, however, I don’t want to see any doctors or medical personnel. I JUST WANT TO LIVE. So I do. 🙂 My hope and intention is to reach that place again, somehow, someway, even if it requires research and treatment to get there.
I do wish friends and especially family members understood more clearly why I spend so much time and effort researching and putting these pieces together. I suppose to understand, however, they’d have to feel as sick as I do so that they could first realize how painful it is and why I am so willing to do anything reasonable I can to relieve myself of this pain. They would have to comprehend for themselves that I simply cannot “just live” like they do without having to run a tight ship with regards to my schedules, diet, doctors, amount of energy expended each day….and that when I do rarely look or act more “normal” or I appear well, they cannot see the steep price I pay when I get home to crash because I’m physically sickened by the effort I expended. Getting out and doing normal things that they take for granted which would be more typical of a 29 year old woman isn’t an option for me UNTIL I get diagnoses, answers, then treatment and relief. This is one more reason I’m motivated to continue researching. I must do the work before I can collect the paycheck.
“I don’t always self-diagnose….But when I do, I make sure I’m convinced it’s Ebola.”
– My self-created meme for the week.