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*ding ding* Round two

April 5, 2011

Well, today can go really badly or really well, we’ll see how it goes. I’ll be seeing the neurologist early this afternoon and I’m hoping it goes better than last time. If not, well then I’m just going to have to get a second opinion I guess…

I’ve had quite a few people suggest what is wrong with me, and all of them only focus on one or two symptoms (mainly, the tremor and pain). The major problem with this (besides the fact that it’s ignoring a massive list of symptoms) is that people tend to misinterpret what the symptom itself is (such as interpreting “pain” as the pain from a pinched nerve, when it’s actually pain in the muscles from them being involuntarily contracted for various lengths of time). Since I’m making a list of all my symptoms to bring to the neurologist (just to make sure I don’t forget anything) I figured I might as well post it here as well to clear some things up.

Note: these symptoms come in episodes with no apparent trigger. I can be completely fine for spans of days to almost a year, and these symptoms can last for a few hours to over a week. They do not always come together but there is never an episode where it is just a single symptom. Here goes:

1. Tremors affecting hands and legs. Ranging from mildly irritating to debilitating. Resting tremor is generally mild, intention tremor is generally more severe (meaning when I’m not using the limb, the shaking is barely noticable but when I say, try to grasp something, the shaking becomes quite violent just as I’m about to grab hold of the object, if I’m lucky enough to get hold of it).

2. Absence of patellar reflexes. You know when the doctor hits your knee with the wee little rubber mallet and your leg kicks involuntarily? I don’t do that, my legs just sit there like nothing happened.

3. Babinkski sign. As explained in a previous post (“babinski, thou art mine enemy”), when a blunted object is run up the bottom of my foot my toes spread out and bend upward instead of bunching together and curling downward. This is not supposed to happen if you are older than 18 months old.

4. Headaches. Ranging from mildly irritating to blinding pain. They can be a dull ache in the back of my head or the sensation of having a screwdriver driven into my eye socket if I move my eye.

5. Involuntary muscle contractions. These generally get worse until the affected limb is completely tensed and I can’t use it. The muscles stay contracted for hours on end, resulting in quite a bit of pain. The muscle contractions that affect my left hand leave my hand frozen in a state where my hand is turned downward with the palm towards my wrist (last time this happened, my hand was stuck in this position for about 5 hours). I have had my hand become frozen like this without a stress ball in my hand and I ended up cutting into my skin with my fingernails. Once a muscle group is contracted, I have to physically force it straight but it just goes back to being contracted once I let go. I rarely do this since it is extremely painful to force the muscles to stretch out (when I was in the ER and the doctor pryed my fingers open to get the stressball out of my hand, it felt like my fingers were going to snap off. Once the ball was dropped and she let go of my fingers, my hand curled right back up).

6. Muscle spasms and twitches. Not as debilitating as the contractions but lead to quite a bit of pain. These generally affect my legs when standing for more than 5 minutes and make it impossible to stand any longer. They also affect my arms, shoulders, and back and on the rare occassion, my stomach. Sometimes I get spasms that aren’t painful, they just make me feel like half my body is made out of jello. The muscles feel like they are trembling and extremely weak.

7. Numbness and tingling. Ranges from just making my lips feel funny to making me unable to drive. This affects my arms, legs, and face.

8. Cold hands and feet. Doesn’t sound like much of a symptom compared to other things on the list but it is noticably connected. When any limb gets affected by other symptoms, there is quite a dramatic difference in temperature. When my left hand was frozen in position, it was much colder than my right hand (which was unaffected by other symptoms).

9. Extremely sensitive stomach. Whenever I’m going through an episode, I have to stick to an almost entirely raw fruit and vegetable diet or end up with severe stomach cramps (cramps strong enough to take my breath away). Red meat and diary products produce the worst cramps.

10. Tightening around the abdomen. This one is a little hard to explain….the best way I can describe it is like having a really wide elastic wrapped around my stomach, pulling tighter and tigher around my stomach, lungs, etc. This makes it feel like I’m having a hard time catching my breath when it gets very bad and eventually some pretty bad indigestion pops up (I’ve had problems with heartburn and indigestion before and it is definately not the same sensation).

 11. Fatigue. Ranges from being just a little more tired than usual during the day to requiring hours to get out of bed and unable to focus. When it gets very bad I must appear somewhat drunk to others because I tend to end up slurring my speech and have a hard time with decision making. You know when someone calls you at 3am, and you just barely get the energy to answer the phone and end up hardly remembering little pieces of the conversation? It’s like that, but all day long.

12. Lost messages. Not like text messages or voicemail, I mean when I consciously try to move an arm of lift a foot…nothing happens, or part of the message doesn’t get through. I’ve lost control of my left arm for hours on end because of this (combined with muscle contractions) and it affects how I walk. Because I’ve had this problem for years, I’ve adapted the way I walk to prevent falling (ex: when going up stairs, I drag the top of my foot along the stair so I can feel how high the step really is so I don’t fall). I end up dragging my feet quite a bit, trip over my own feet, and unfortunately occasionally stumble into people and objects or accidentally step on peoples feet (sorry!) Thankfully this hasn’t leg to any major injuries but I’ve had quite a collection of bumps and bruises from stumbling into table corners and whatnot. It’s also lead to me spilling a drink all over myself because I only brought the glass halfway to my mouth, thinking it was at my lips.

13. Pins and needles. Similar to the tingling, but painful. You know when your foot falls asleep, and you get that horrible sensation when its starting to wake up? Imagine that, but if the pins and needles were on fire. I get this in my fingertips, toes, and face.

14. Pain. Again, not the pain of a pinched nerve (I’ve had a pinched nerve before and it’s not the same). The pain is in the muscles and feels exactly like muscle strain…because that’s what it is (thanks to all the muscle contractions). The pain can last for days after other symptoms are gone.

As I remember more symptoms I’ll add them to the list. The three most common suggestions I hear about the cause of these symptoms from associates is a pinched nerve, thyroid problems, or diabetes. I have had my thyroid and blood sugar levels checked several times by an endocrinologist and both are fine. A simple pinched nerve does not cause the majority of my symptoms, and the symptoms that it could cause do not work properly (ie: the problems with my left hand work their way up from my fingers, not from my shoulder down). Also, if it were some sort of endocrine problem these symptoms would be more generalized, entire body affecting symptoms instead of affecting my left side more frequently. Excessive caffeine has also been a suggestion, despite the fact that I do not drink nearly enough caffeine to cause jitters.

So far diabetes, thyroid disfunction, brain tumours, strokes and TIAs, and bleeding in the brain have been ruled out. I don’t do drugs, and drink socially. These symptoms have gradually increased in severity and occurance over the past 8 years. This particular episode that I am going through is the longest lasting one so far (the previous longest lasting episode was about 3 days, this one is now at 9 days).

These symptoms completely mess up what I am able to do. When symptoms start I have to give up driving temporarily, which anyone that knows me personally can tell you is a massive indicator that something is really wrong (I’m one of those weirdos that enjoys driving and does it to relax). I’ve missed work because of symptoms. Obviously I’ve managed to adapt, but I shouldn’t have to. I shouldn’t have had to learn how to dress myself with one hand, I shouldn’t have had to learn how to feed myself in time with the tremors so I don’t end up wearing my meal instead of consuming it. This should have been taken care of 8 years ago, but instead I was completely ignored. No tests were ordered, not even a basic exam was done. All I was told was “it’s not bad enough for medication yet, get out of my office”. Notice the word YET. I think it’s understandable that I’m quite irrate over how this whole thing and do not have high hopes for today (since this neurologist that I am seeing today is the same one that told me to get out of his office).

I’m sick and tired of being sick and tired, and I’m refusing to stop until I get a diagnosis. Whatever it is, it is clearly getting worse and I have far too many things left to do on my bucket list to let an unknown condition put a stop to my life.

Ok now..deeeeep cleansing breathes, woooooosaaaaaaawwww.

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