Testing, Testing, Wrong.

I'm being put through a new battery of tests by my new neurologist. Some of them are tests I've done before and some are new. Its an intense 3 weeks. I'm happy to have all these tests done if it moves the process along and we can figure out how to get treatment for me so that I can recover my life.

However, I find some of the tests problematic. I don't understand how the medical world figures out anything, sometimes. Here is a short list of the inanity of the testing protocols I've faced:

1. I have complained for years that my hearing has become over-sensitive. Air conditioning systems are a constant tidal wave roaring through my head. I can hear small sounds hundreds of feet away and they grate on my brain. Sharp sounds are just that: piercingly painful. The world is a heavy metal concert assaulting my head every day. It is the single symptom for which I would take my life if I were so inclined. I have only had one doctor even note my complaint about hearing.
   
   When she did, I was sent for hearing exam. An exam to test for hearing loss. Hey, guess what? I don't have any hearing loss! Yet, this is the screening test for referring you to a hearing specialist. Even though hyper-acusis is a known hearing condition, in our health care system, controlled by insurance companies, one must fail a hearing loss test to be referred to an ear doc. Testing, testing, wrong.
   
2. I live with tingling/burning/numbness/sharp pains in my extremities. For the most part this is just annoying and distracting. I've learned to move through the pain and the other sensations have become part of the white noise of my internal self. It does bring functional issues. I don't feel terrain properly under my feet, so I can be klutzy, even injure myself. I also have tremors and those cause functional issues. Sometimes I can't write or hold a cup or do myriad things that require fine motor control. At this point, since I'm used to having pain which is not a real "injury", my brain doesn't react to the pain in my feet the same way it used to. What this means is that I've actually injured my feet or ankles without realizing it. Not good. Mostly, though, these neuropathies are an indicator that something is going very wrong in my nervous system.
   
   So, I'm sent for an EMG, or nerve conduction exam. The exam took more than twice as long as expected and, of course, I asked why. "Because we're getting the lowest possible reading in the normal scale on one side and the highest possible normal reading on the other side. We never seen anything like this before, so we're rechecking to make sure we're getting the right readings. This is very abnormal. But, both readings are in the normal range, so we're reporting it as normal." With that, there is no more consideration of my neuropathies. Testing, testing, wrong.
   
3. Yesterday, I went for an Autonomic Nervous System test, aka Tilt Table Testing. The docs have determined that there is something wrong with my autonomic system because I have body temperature control issues, heart palpitations, unexpected shortness of breath, sudden weakness, high IgG levels without having Celiac Disease and I suddenly became allergic to every single thing I've been tested for. The one test for whether my autonomic system is in disarry is apparently this Tilt Table Testing.
   
   In this test, they hook you up to pulse monitors, blood pressure monitors and breathing monitors. You lie down and get relaxed on a table and they take baseline measurements. My resting heart rate is 50. Then they have you do a breathing exercise. Basically, deep breathing: "breathe in as deep as you can for 5 seconds, then let the breath out over a 5 second period." Meditation anyone? I do a lot of it. This kind of breathing is calming for me. I'm not sure what they're measuring with this. But then, they strap you onto the table and tilt you up to a not-quite-vertical position, with one arm propped out parallel to your heart level. It's a stress position. Its fairly uncomfortable. My wrist and elbow on the propped arm were in pain, my knees and feet were in pain. I was physically uncomfortable. What they're looking to do here is to stress the autonomic system and see if the heart rate/breathing/blood pressure dynamic gets out of whack. Only one problem: I don't necessarily get stressed by physical discomfort. I can breathe through it. I used to be a competitive athlete. I performed in state aerobics competition with an ankle that I had sprained just 2 day earlier. I broke my wrist about 5 years ago, walked to my neighbor's house  and asked if they would sever me dinner before taking me to the emergency room because I knew it would be a long wait. I was very calm. Its just something I've learned to manage. I can acknowledge pain so that it can be attended to without becoming stressed. Pain is temporary.
   
   So, if they were trying to create a stress reaction in my body, physical discomfort was not the way to do it.  
   
   Meanwhile, my heart rate peaked at about 80. Now, that's a 60% increase over my resting heart rate. If anybody else's heart rate had jumped 60% instantaneously, it would have been noted as a stress reaction. Not mine, because 80 is a normal resting heart rate for many people and it is not considered to be stressing the heart. So, it will be recorded as "normal". My systemic dysfunctions are not going be validated. I'm penalized for starting at a much healthier baseline. Testing, testing, wrong.

Don't get me started on how the insurance-controlled testing protocol for Lyme meant a 2-year delay in diagnosis. Now, if that Tilt Table technician wanted to see my body get stressed, he should have asked me to talk about how this damn system is screwing me over!