too much?

My parents always placed a premium on education. It was important and invaluable to know what was going on in the world and to educate yourself. I’ve always known what I wanted to do. It was never even a question.

I’ve been sick all of my life, constantly in hospitals, constantly sick with everything from pneumonia to allergic bronchitis to asthma. My lungs demand more than their quota of attention. I remember sitting on gurneys being pulled from a hospital room to the laboratory to have blood drawn. I loved the lab and its many sounds. The whirring, beeping, and alarms. How could they find the answers in my blood? What were they looking for? Yes, I wished they’d hurry up and find it, but I was absolutely enthralled. The healthcare workers humored me by telling me in simplified terms, of course, what they were doing. I wanted to be like them. I wanted to look for answers and find out “why” things happened or went awry. I wanted to feel better, too, but I knew what I wanted to be when I grew up.

I am allergic to a dizzying array of medications. I almost didn’t make it several times as a child due to this fact. How could they give me the wrong medicine? Why didn’t they know that it would make me sick and almost kill me? I wanted to know this, as well.

I had my first MS symptoms when I was 17 although I wasn’t aware of it. I saw a neurologist on the Naval Air Station military base in Guam where I lived. He told me and my very worried parents that it was stress. I worked hard at my job in the hospital, took classes at the community college, and was heading back stateside for college soon. He wrote in my file that I am an “over-achiever”. We all know what stress does for MS (or a healthy body for that matter). I believe he was correct in his diagnosis, but he tipped his hand by writing other things in my chart about his neurological exam and the pattern of my numbness. When I handed that same chart to a neurologist many years later, he remarked that I could have been diagnosed at that time. There is hardly a day that passes that I don’t quietly thank that military neurologist in Guam for NOT diagnosing MS. My life would have been rather different

In any case, Guam being a tropical location meant that I wasn’t concerned that the tingling and numbness had anything to do with my respiratory system—the usual culprit. I wasn’t likely to end up in the hospital with pneumonia or the flu during the winter holiday as I had almost every year. As far as I was concerned, I was good to go. Ah, to be young and naive.

Fast forward 11 years to early 1991, I was in San Francisco with a friend taking a weekend off from work at the University. We visited the Japanese gardens, and it struck me as odd I felt uncomfortable using stepping stones to traverse a pond. My gait was normal, but it was clear to me that my vestibular system was having difficulties of its own.

Next stop was a migraine followed immediately by optic neuritis. My thesis WAS, after all, on pioneering axons in the retina. It was extremely impressive to contemplate the faulty conduction in my optic nerve, lack of depth of field in my vision, and the inability to step off curbs, but for only a very short period of time. Okay, Houston, we’ve had a problem here.

I went to see the MD at the eye clinic that I knew. He administered a field of vision test. As we both looked at the computer printout and saw all those marks denoting where I did not see or detect anything, but was supposed to, we were silent. I remember thanking him for his time and telling him that I thought I’d be going over to the hospital now in a rather nonchalant manner.

To my sports medicine MD I went for a referral to a neurologist. I knew it was time we finally address the occasional tingling and numbness in my lower extremities we’d both been “ignoring”. I believed I had MS or a brain tumor, and I needed an MRI to tell me the answer. The neurologist was not someone I would continue seeing, but I needed that MRI. After the scan, I played stupid and cajoled the technician into showing me the ”pretty pictures” on his “nifty equipment”. Poor guy could’ve lost his job, but I had my answer.

I went to a hospital in a bigger city to run a battery of tests with a neurologist I knew and trusted. I had worked with human tissue before anyone thought it prudent to use protection. It was only smart to check for other things although I knew deep inside that MS fit the symptoms perfectly.

My response to the diagnosis was typical, I think. I was going to understand it as much as possible and, therefore, overcome it with knowledge and my inner strength. Repeat after me: DENIAL. My MD who held privileges at the hospital ran a literature search as I requested, and I found myself in the science and hospital libraries pouring over journals. As one might imagine, I did not like what I found. Sitting there among all of the books, I realized what I was doing was NOT going to work. I couldn’t hide from this. Researching it would not make it disappear. Knowing what you are up against doesn’t mean you automatically accept it—psychologically or emotionally. Just because I could explain the biology behind the disease didn’t mean squat. I certainly had not accepted it fully at that point. I will forever be thankful this phase of denial did not last long.

I remember wondering how I would handle this diagnosis if I were someone else, if I didn’t have the knowledge that I did, didn’t have degrees in biology. I would rely on others and believe that they were making the correct decisions for me; this is the manner in which most people operate. Does the knowledge I possess confer some amount of power in the understanding or simply take away the ability to fully trust my doctors, rely on others, and believe in the possibility of healing because I am aware of too many statistics, aware of the probability or improbability of something occurring or working?

I’ve even encountered people who say they are glad they are not burdened with lots of information about their disease; they go with the flow and trust their MDs implicitly. I guess it all depends on an individual’s perspective. Knowing too much? Is it possible? Does it have a negative impact on my health, on my improvement or stability? The brain’s role in physical health is a powerful thing. If I wasn’t aware of certain issues, I could blissfully continue to take specific medications and believe in their promised enhancements. The data is quite positive, but I question the science. It is, therefore, improbable that it would work for me, but it doesn’t mean that it is not efficacious for others. One could ask if I’m better or worse off than those people.

I still ask these same questions, and I still have no answers. Every time I have some new symptom, I think, ever-so-briefly, “I wish my brain was NOT going down the probable path of explanations right now.” This only last momentarily, however. I’m just more comfortable knowing the possibilities. My background has allowed me to closely monitor and evaluate the development of new therapies for MS over the years and to avoid fad cures. I’ve watched as the understanding of the biology of MS has been reformulated. We don’t remyelinate. Yes, we do. Don’t get vaccinated. Absolutely do NOT miss your flu vaccine. Betaseron works through elevated beta interferon; no, it works by lowering a heightened gamma-interferon. I have honestly lost track of what they think about Betaseron save the fact that since July 2012, they no longer believe it delays the onset of disability the way they initially thought and claimed in their 1993 papers when it was initially approved by the FDA for the US market as the very first drug for MS. That is another post.

I’ve had plenty of opportunity to be thankful for my knowledge, but I’ve also spent plenty of nights remembering the cranial nerves mnemonic and considering what happens if 5, 10, or 12 demyelinate, hell, if any of them do. I’ve experienced trigeminal neuralgia and require intubation for dental procedures, so I’ve had plenty of opportunity to revisit this subject. My partner asserts that had I gone into mechanical engineering instead of science, I would still be awake at night. I’d just be wondering about things I don’t know about my condition. My NATURE would remain inquisitive no matter what my vocation. Inquisitive or neurotic…I’m not sure which sometimes.

My knowledge, however, also allowed me to watch Cordain’s lectures, read Fasano’s research and understand the importance of going paleo immediately if I wanted to ameliorate the conditions I am living with. I can’t help but wish I would have been privy to this information at an earlier date, but I suppose that’s wishing for a different life. I don’t want a different life. I love the one I have too much.

PS I do trust my doctors. I’m just extraordinarily picky about who they are. I actually go in and interview THEM before handing over my files. One nightmare I have is to be in the hospital and look over to see someone who I do not trust (they believe carotid stents cure MS) writing orders on my chart. The best way to insure that never happens is to absolutely ADORE the doctors I see and make sure we have a meeting of the minds.

2 thoughts on “too much?

  1. Oh Tracie,
    So much of what you’ve said resonates so much with me! I however do not have your scientific/medical background but share with you an overactive inquisitive (or neurotic!?) mind! And yes I question myself “can you know too much?”…. however I wouldn’t change that and would rather have too much information rather than live in ignorance. However what frustrates me most is other MS sufferers (I don’t like using that word!) who do not embrace a change of lifestyle/diet!!!! But that’s something I’m working on and trying to let go! Let’s never loose that thirst for knowledge, in all aspects of our lives Tracie!
    Best wishes,
    Laura

  2. Dearest Laura,
    Us neurotics must stick together! Your continued support is much appreciated. It is difficult & most rare to find , how do you say…another MS sufferer, who thinks the same way. People just find it easier to go with the the flow, don’t question, don’t read/ponder, and follow their MD’s advice instead of trying something else. (I don’t like that term either, but what do we call it? Perhaps we might strive to come up with something more positive.)

    I, like you, am working on letting go of the frustration I feel when others recoil at my eating vegetables for breakfast yet are on a handful of meds for their autoimmune condition. “Free will,” I keep telling myself. We all have a choice.
    Fondly,
    Tracie

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