I don’t have much to say tonight except that I saw the neurologist today and confirmed the diagnosis for MS. The BAER test showed irregularities and the spinal tap showed evidences of MS disease activity. That’s three diagnostic tests that point to MS (these plus the initial MRI brain scans showing five lesions).

Somehow, this time I’m not taking it hard this time. I guess I already shed my tears with the initial diagnosis a couple months ago.

I feel fine; some minor tingling in my legs and constant ringing in my ears but otherwise fine. The spinal tap pain is almost all behind me; I still feel weirdness in my lower back from the blood patch but I otherwise feel fine.

I now need to prepare myself for continuous therapy. MS therapy comes in injection form—stabbing myself with a needle regularly. Fortunately, there are prescription pills coming out in the next year that will replace the injections. My neurologist tells me not to wait for it, which I won’t. I’m just glad that it’s coming.

I can cope with this new knowledge that MS has been confirmed, but two things about it scare me significantly: serious physical disability (especially in my hands, eyes, and internal organs such as digestive system and bladder) and cognitive disability (failure of the mind and memory) to any extent. None of these are affected so far at all, thank goodness. My hands, eyes, and mind are my primary tools for my career track and what I use for my free time (which is the same as what I do for my work time – computing!!) so if I get crippled in any of these areas I will have to find something else to do with my time and abandon what I’ve invested all of my adulthood into.

But let’s not go there any further; I feel fine, and I’m still in the game, still as capable as ever. Hopefully the treatments will keep things this way for a very long time.

I really never planned on using this "personal blog" for constantly yakking about my medical health and health issues. But I just wanted to add one more thing.

I came across this today: http://www.necksecret.com/Multiple_Sclerosis.html

Skip the first 3/4ths of the page (blah blah blah). Read the notes and watch the video at the bottom. 

It turns out that the neck can produce MS-like symptoms, and it could perhaps even be one of the culprits of MS causes (that might be saying too much, I don't know). 

But I can say this. The very first time I got one of those really weird dizzy spells that felt like nothing I've ever felt before, which was the beginning of a couple weeks worth of this same thing recurring over and over again every hour or two or with each deep inhalation of air, that first time it happened, I was sitting on my sofa, with my head tilted way over to the side while I was slouching, and I sighed and twisted my head and pulled myself upright. That's when it all happened. It wouldn't surprise me at all of this was neck-related. 

As I previously blogged about, I had been given an early diagnosis of multiple sclerosis (MS) based on a brain MRI that showed lesions in my brain. This diagnosis came about by my asking doctors questions about some strange neurological events I've been experiencing lately.

I saw the doctor this morning. The latest rounds of diagnostic tests--a VER test, an MRI of my neck and spine, and some blood work--all came back showing normalcy. No sign of MS. So far, only my initial brain MRI suggested MS.

My neurologist is still "leaning" towards MS, however, because of the brain scan. So it wasn't all good news; I now need to get an ABER test and a spinal tap. If those come back negative, too, the neurologist will close the book on all this. Or so my neurologist says.

I'd be happy with that, except for how the spinal tap was described to me. The spinal tap procedure already kind of scared me. But now it's what's after the procedure that upsets me. I was told today that when I get the procedure done, I need someone to drive me home while I lie down on my side in the car, and then I need to go straight to bed. And then I need to lie there in bed for 24 hours. Joy. After a day has gone by, I have to put a pillow under me and wait an hour or two, then put another pillow under me and wait another hour or two, and keep doing that, and when I finally get up and am able to walk around, well, great.

This becomes a potential logistics issue. I live alone. 

Since I was given an initial early-diagnosis of MS (and am still waiting for confirmed diagnosis results from my neurologist, now that I've had a VER test, blood work, and a spinal cord MRI that took an hour and a half), I've been paying more attention to my body and logging (into iPhone) the strange things that are happening to me. My symptoms so far are quite mild.

1. Most notably, for about two weeks starting on that day of my last neurologist meeting, I logged tingling in my left arm and left leg that would never go away. Sometimes it was so bad that my foot (actually both feet) would get a bit spasmic.
2. For a few mornings I kept waking up with a partially deaf left ear. There was one morning that it was almost completely deaf after I got out of bed. It only lasted an hour or so. It's not so bad anymore, although I have chronic ringing in mainly my left ear.
3. There were a couple mornings when my left index finger felt strangely cold, and crushed, like I had recently pounded it with a hammer. But it wasn't a throbbing pain, it was just a really vague sensation of coldness and a crushed feeling.
4. One morning after getting only a few (like, three) short hours of sleep and having to get up to get to work, I noticed that all of the above was really badly compounded, and I was getting a little bit of vertigo, and even as I laid there in bed trying to gain consciousness I started getting some twitching on my left cheek. The twitching was psychologically uncomfortable. I've had muscle spasms before; these weren't muscle spasms, they were very strong, but brief, muscle contractions at full, 100% clench-power. It was as fast as a spasm but more painful in that split second than a leg cramp. That was fine; what makes me so uncomfortable is knowing that it could get, and probably will get, a lot worse, with a lot more of these happening, for longer periods, and not just twitches but all-out seizures, if I don't get this MS thing under control.

My greatest fears about MS are:

1. Losing cognative abilities, including the ability to think, to speak, or to control my emotions.
2. Losing internal functions such as a broken-down digestive system or loss of bladder control.

Most other known MS symptoms don't scare me as much, not even the notions of being in a wheelchair or losing my vision.

Anyway, I've come to new conclusions at this point as to how MS happens and how I can keep fighting it.

The new theory that I'm pondering is Vitamin D deficiency. My neurologist suggested Vitamin B12 deficiency, but I suspect Vitamin D, which is created internally in the body when exposed to sunlight. I used to joke with friends and colleagues that I have the darkest "monitor tan"--the "tan" of radiation from a computer monitor screen that actually shows itself as the palest white imaginable because I really don't get any sun whatsoever. This would make sense, and it fits because the only known lifestyle pattern that I've heard of that relates to the risk of acquiring MS is "people who live in high altitudes" or "people who live in cold climates". The places these people live in are really just low-sunlight areas. Canada, for example, has some of the highest MS rates on the planet, and it's half-dark there compared to here. Yet, the only sunlight I ever see is the light exposed to me as I walk (waddle) from my home to my car to get to the office, and back again. If anything sets my lifestyle apart as high-risk for MS it's the incessant exposure to a computer screen and lack of exposure to sunlight.

Now that I [might] have MS, or at least have been given a pre-diagnosis of MS, the questions become, how do I combat it?

MS is incurable, but there are therapies, none of them are likable. They are taken as injections, and those injections come in different ways. Sometimes they are injected into muscle tissue, to make them last. Joy. I really don't want to deal with this, but it might be that I'll have to.

Meanwhile, I'm going to stock up on Vitamin D. I've already been taking Vitamin B12. And I've also boycotted the use of aspartame, which I still think might have played a role in worsening the whole situation.

Exercise is important, but not in the same ways that exercise is important for most other things. It's not as important as it would've been if, say for instance, I was struggling with high cholesterol. What exercise does do that's good for me is produce chemicals that are good for my brain and helps me cope, and perhaps stay stronger, longer. It's still important, but won't fix anything.

When and if internal functions begin to fail, such as not sensing the failure of internal organs, or being unable to digest food correctly, or being unable to control my bladder, that stuff I have absolutely no idea how to manage. I'm not there yet, maybe I never will be. Let's see where this train ride takes me.

So I haven’t posted any blog posts lately because I’ve been distracted for the last month with two very stressful concerns. The first stressful concern has been a major new “reboot” (a la Star Trek) of an old product at the office that’s years old that is so heavily overhauled on the front-end it’s being renamed and given a version of v1.0. We’re scrambling to get that done.

The other concern has been related to a couple blog posts ago here. I’ve been trying to figure out what on earth was going on. Those weird dizzy spells became tingling and involuntary facial cramping on the left side of my face, and I found for a time that I could trigger the attack simply by inhaling deeply (yawning, sneezing, sighing, etc).

I went to my doctor to set up an appointment, and they insisted that I go to the ER (emergency room). So I did. I spent four hours there, got a heart x-ray, an EKG, and a CT scan. Everything came back negative, they had no answers for me. Went back to the doctor, and after having me perform a number of basic physical tests he said what he’s said twice now: “Well, is it all in your head? Yes! It is! But it’s probably real, and we need to figure out what’s going on.” He scheduled me for an EEG and referred me to a neurologist and sent me on my way.

I cancelled the EEG because the co-pay was very expensive, and the symptoms had disappeared (coincidentally, just as I stopped drinking diet sodas, as I thought [and hoped] it was aspartame poisoning).

I went to the neurologist, an intimidating elderly woman with tall stature and glasses, and she asked me a series of questions and let me tell my story. She had me do more basic physical tests, and scheduled for me another MRI scan and another EEG test. Scheduling me for a follow-up appointment for six weeks later, they told me that they don’t tell me scan/test results over the phone, but if they find something, they’ll call to schedule an early appointment.

I canceled that EEG test again (same reasons as before), but did the MRI.  Within a day or two, they called me to schedule an early appointment. This was the first time my heart sank. Why an early appointment? They must have found something. What could they have found? A tumor? Oh no..

That was a week ago. This morning I showed up and was asked what symptoms I experienced as a child. None, apparently. I was asked whether I lived as a child in a high altitude location. Nope.

“Okay, Jonathan, here’s the story for you. You appear to have multiple sclerosis!”

I was stunned. Actually, I was confused. I didn’t really know what MS was. She explained it was an autoimmune disease where the immune system kills off good brain tissue, leaving lesions in the brain.

I wanted to be in denial. “Are you sure? Is this really the diagnosis? It can’t be anything else?”

“It looks like it. Let’s look at your scans. Come on over here and look with me.” She had my brain scans on the film lamp. “These are different slices of your brain, this here is the top of your brain, this is the bottom, see, that’s where your mouth is, your teeth are in that area. Alright, now look here. See that white mark?” She pointed to a large white speck about two millimeters in length and half as wide on right side of the half-life-size photo of a slice of my head. “One,” she points to another slice image on the film, “Two, .. and then that’s still two, it’s just perpendicular to the scan so it’s the same lesion higher up in your brain, .. Three, .. Four, here on the left side of your brain, .. and Five. Five lesions.”

I didn’t know how to respond. “Those marks can’t be caused by a TIA? I thought for sure it was some kind of TIA.”

“No! TIA looks nothing like that. I look at these brain scans all the time.

“I really didn’t expect to find this. This was very surprising. So the good news is that MS is treatable. The bad news is that treatments must be injected.

“I’m sending you home with materials. I could sit here and talk to you for a very, very long time about MS, as there is a lot of information about MS and a lot you need to know, but I’m going to provide you materials. This is your homework. Are you computer savvy? You look like you’re good with computers.”

“Oh, I look like a computer nerd do I? … Yes, I ..”

“I’m going to give you a list of web sites that you can look at about MS. Take a look at them, there are lots of communities for people who cope with MS.”

I left that place, CT scans and MRI scans under my arm, having no idea what this meant. “Hey I don’t have cancer, cool. And I have a name for these weird symptoms.” I showed up at work and laughed about it with my co-workers. “I apparently have MS. That’s the good news!! The bad news is that I’ll have to step out from time to time to do some more tests.” And, “it’s not fatal, great, otherwise would be time to create your bucket list! … Have you seen Bucket List?” We chatted about the movie for a few minutes...

I went through the day happy. I thought that the five lesions were it, that if I’m okay now I’ll be okay forever, that the damage has been done, and I’ve already experienced what came of it.

When I got home, though, and started reading those materials, my attitude changed. “We cannot predict what symptoms any one person will experience with MS. What we do know is that most people who have MS eventually develop a permanent disability.” That one sentence had me frozen for a few seconds as I swallowed hard and began to take in the seriousness of what I’ve just discovered about myself and the rest of my life. To whatever extent “I” fall into “most people”, I am guaranteed to develop a permanent handicap or disability because of this problem. I started to cry. This isn’t an incident I’m going to “get through”. This is a life-term prison sentence.

I continued reading the materials, and then when my sister called I was crying again. As we chatted, I realized that we (my sister and I) both knew a guy in church years ago who suffered from a rare case of MS. He was stuck in a wheelchair, completely paralyzed, and could only move his eyes. His wife had to vacuum out the mucous from his lungs and throat so that he could breathe or he would die. Eventually, he did exactly that. He died.

His was a rare case of MS, but it has been in this late afternoon that the seriousness of what my neurologist has revealed to me has sunk in. My sister and I sat there crying on the phone, telling each other how much we love each other.

I’m crying as I write this, my entire left side of my body feeling slightly numb and tingly. I don’t know what will become of this. I might live a long, fulfilled life, with only occasional relapses (best case scenario). I might lose my cognitive abilities and my ability to walk and to perform at a job. Things might not change for years, they might drastically change in the next few months.

I just don’t know.

So I’m going to start counting my days of cognitive and physiological normalcy, thanking God for every breath and the mental capacity to value each day.

No one ever knew what the future held for them anyway, to ignore our inevitable mortality and unknown fate is playing Russian Roulette with our purpose in life. I don’t believe anymore that I put this on myself—aspartame overdose or otherwise. It just happened. God let it happen. And to what extent His grace is sufficient for a brat like me, my mortality is something to be grateful for—a greater guarantee of being with Him sooner rather than later.

http://en.wikipedia.org/wiki/Multiple_sclerosis

At work I've been in a temporary crunch, a major new product version I'm almost exclusively responsible for has been close to release and a new v1.0 replacement product is underway, and I've been in the middle of it all as a key engineer.

It's time spent at the computer, such that when I'm working hard, my physical body is hardly working. Days of extra effort inevitably become weight gain days. I try to be careful about what I'm eating, but I'm frankly too busy to care to the point of taking any extra time to fuss with it.

Normally I'd love these moments, there's nothing worse than being so under-utilized that I have to look for things to do to make myself feel valuable at work. Unfortunately, though, I'm dreading the fact that I just went through this, because I'm worried that I may have crossed some kind of ugly threshold.

Lately I've been getting these strange, subtle dizzy spells. They're really hard to describe, it's like something is poking at my brain's capacity to be steady and self-aware, like I'm about to faint. It's also a flickering and unnerving unsteadiness, not just an "I suddenly feel sleepy" sensation, rather I can feel my eyelids blinking fast as I suddenly can't think clearly or hold my head up straight, and the sensation is almost like someone is whispering in my ear very softly but very distinctly and clearly, "Something is wrong." The sensation lasts for about five to ten seconds, then goes away completely.

I asked a doctor to give me a check-up half a year or so ago because at the time I'd been suffering from migraines, but I told him I was paranoid because my grandfather died of brain cancer and he and I were a lot alike in that he was an engineer of sorts and he used to stay up late doing his work. I got an MRI, just to clear the air and get that detail behind us. It came back negative, "absolutely nothing looks wrong".

However, the doctor did say that I have high cholesterol. This didn't sound surprising, I am overweight, after all, and high LDL is typical in overweight and under-exercised people, so Google shows me. I haven't seen the doctor since then, and I also gained a few pounds since then as well. (Shame. But I call it "new job stress".)

Knowing that the only absolute that came back from the doctor as a health concern was high cholesterol, this has me obviously wondering if my dizzy spells are signs of something potentially very serious, namely an impending heart attack or stroke. I'm actually more nervous about what will happen when something serious might show up than the incident itself, because I live alone. If I am sitting around watching TV and suddenly a stroke comes on and I collapse right where I am, it could be a week or two before I might be cognizant enough to be able to call 9-1-1 if I survive something like that at all. Can we say, "dehydration"?

These dizzy spells are really subtle but sudden and distinctive enough for me to notice. Although this happened about three or four times even today--even just a few minutes ago after rolling over in bed before I got up to blog this--I haven't seen anything else happen that might raise eyebrows such as numbness on any one side of my body or face, vision loss, crushing pain in my chest (just heartburn which I've been experiencing more of lately, strangely, ever since I dropped Nutri-System), etc.

If anyone's reading this, don't worry, if I get any other symptom, particularly those above which I haven't experienced yet, I will seek professional attention. 

Meanwhile, I myself am going to try not to worry. I'm consuming fish oil, vitamins B6, B12, and folic acid like candy (so to speak, no not overdoing it), and today I went for a bicycle ride for half an hour. (I'm so out of shape I only went 9 MPH on level roads and felt like I was hauling a train. Yeesh, that's bad.) I'm gonna try to do that or something like it every day from now on after work, if not to and from work. I have a new weight bench, some dumbells, a super-cheap elliptical machine I rarely use, and a new super-cheap motorless treadmill that I've never used. I have no excuse, really.

On a more positive note, my most-frequented fast food joint, Wendy's, has the best french fries in the land, but, alas, I'd been avoiding them because I thought they'd skyrocket the cholesterol situation. Turns out, the amount of cholesterol in Wendy's fries is zilch, thanks to an oil switch they made a year or two ago. W00t!! Now I can buy them virtually guilt-free (only have to watch the fat and sodium levels). I've also been taking a liking to the Premium Fish Fillet Sandwiches which are relatively low on the cholesterol bar. Sadly, in the process of discovering all this, I also discovered that my thoroughly enjoyed intake of their Sausage & Egg Burritos in the mornings over the last month or so was the worst choice cholesterol-wise I could have made. Two of these tiny little things (they come in two's) together are way over 100% of the daily cholesterol limit. Total bummer, I loved starting my days with those when combined with Wendy's hot sauce.

UPDATE (4/22/2009): Monday (couple days ago) I experienced an incident of such "dizziness", I noticed my head went limp, my face started tingling, and I noticed that it was really difficult for me to smile (left side felt like I was sitting in a dentist chair for a filling). I was in the middle of a meeting in a conference room and didn't mention anything until later. That night I went for a walk, went to bed a little early (which for me always means waking up in the middle of the night wide-awake if the previous night didn't get a full night of sleep), and when I woke up at 1 AM my whole left side of my body--my face my arm, my leg--was numb and tingling. It was subtle, but very noticeable, and not the sort of numbness and tingling that come from limbs "falling asleep", something felt very wrong. I was, however, able to walk straight. I went for a walk for about half a mile, then came back and Googled for "mini-stroke" information. One site actually said, "some people wake up from sleep and find that half of their body is tingling and numb; these people probably had a stroke while they were sleeping". More Google homework shows that mini-strokes are normal strokes that resolve--hence, no brain damage, just lots of fear. However, mini-strokes are VERY serious signs of need to make lifestyle changes, because they literally mean that a major, unresolving stroke may happen within three months.

I've been getting these dizzy spells every day, about four times a day, there's been no let-up, and each time I can feel my head unable to hold up straight, my hearing drop to about 30%, my left cheek and entire mouth and jaw tingle, my vision dissipate, and my chest feel heavy and tingly. This has become a serious wake-up call for me. I've started taking Aspirin (one a day), some cholesterol-balancing supplements, and some fat-loss pills, and I've been trying hard to avoid red meats or anything else with LDL cholesterol. I'm getting some exercise (walking or bicycle-riding) daily now, today was an exception because of some late hours spent at the office.

I want to see a doctor and would have tried to already but I'm stuck because Blue Cross / Blue Shield wants to do anything they can to keep their customers from getting their lives saved. Seriously, though, they have this one-year waiting game they play if you are unable to provide proof of prior insurance for the last 12 months upon joining a job (I joined my current employment in late January), and I did get some attention about migranes in November/December. So the insurance company won't cover me in these circumstances. And I can't throw myself into potential new MRIs or CT scans if I'm expected to pay up front. These are just businesspeople.

I don't know when my first incident was, but I think it was last Saturday while I was watching TV and computing with my laptop. It scared me then, it scares me now. Five days into it, I'm counting my days... :(