A “Good” Test Result

July 26, 2012 at 10:11 pm (Chronic Pain, Living, Medical, Spiritual, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , )

Today I finally got one of the tests that Neurologist number 5 prescribed back in November. (Things have been kinda hectic, medically, since then, so I put them on the back burner.) It was a EMG, specifically a surface EMG. This means they put conductors on my skin and ran increasingly strong shocks through my nerves to see how they reacted.

The test was quite painful. At the higher levels, it actually felt like my tics do, and some of the shocks caused noticeable tics for a few minutes afterward. This is a good thing, as I rarely seem to tic in front of a doctor during a visit, so at least a medical professional has now borne witness to the phenomenon. It may also end up helping me better explain what I mean by “tic” to doctors, too. But let me tell you, it hurt. I cried, and I’m no pain wuss. In fact, for several hours afterward I felt sore and my nerves were over-active.

Because this office is awesome, after the test was over the doctor came in and told me the results. (Usually, when you get a medical test, the tech can’t tell you anything about what’s happening or what they see, so you end up having to wait until your next appointment to find out what it all meant.) He was very concerned – I’m not entirely sure what it means, but he repeated that I had “low amplitude” several times. He first posited that this might be because I am obese, but I pointed out that my limbs are fairly slender and I carry most of my fat in my torso. He agreed with me, and became more concerned. He decided that since the results were markedly “low”, that there could be some “artifacting”, which I assume means that there was something wrong with the test or how it was administered.

To my dismay, his recommendation was to repeat the test at one of the Big Hospitals in our area. I’m starting to think that living in an area where I have access to two major cities, and thus their world-renown hospitals, may be a double-edged sword. I used to think it was a good thing, but with all the crap I’ve had to put up with from Johns Hopkins (including sending letters in the mail asking for an appointment and them going unanswered – after several attempts via phone and email), I am starting to dread the Big Hospital referral. The neurologist suggested other Big Hospitals (George Washington being the one I’m going with). I’m also unthrilled, obviously, that I have to undergo a pretty unpleasant test yet again; especially now that I know how bad it is.

There’s a second kind of EMG, where they test the nerves inside your muscles. This requires a needle-like probe; I’m not afraid of needles at all, but I had another neuro try this test with me and it was so painful I had them stop the test. This neurologist wanted to try that test, but seeing what shape I was in after the surface EMG, he decided I’d had enough “torture” for one day.

Part of me is kinda elated; finally, a test that proves that there is something neurologically wrong with me! After all the hoopla of getting various MRIs, and having to find stronger machines that can accommodate fatties like me, only to have doctors dismiss me because I couldn’t find an appropriate machine; this is actually progress. But part of me is scared: that list of disorders that abnormal EMGs can mean is pretty daunting. I did notice that Polymyositis was on the list, and that’s a diagnosis I’ve heard before from my pain management doctor. (It’s one of the ones that qualified me for the wheelchair.) It basically means “inflammation of the muscles”, which doesn’t explain half my symptoms, but it’s a word. And words are powerful.

Of course, since my neurologist is also a sleep specialist, he noticed I had not yet had my CPAP titration, and he is concerned that my apnea may not only be playing into some of my symptoms, but as he put it, “Neuropathy won’t kill you, but apnea will.” So he wouldn’t let me leave the office until I scheduled that. He did do me a solid – he wrote on all the paperwork “Patient may sleep on their side” – most sleep studies force you to lay on your back, but a) I don’t sleep on my back, ever, so it doesn’t accurately represent how I sleep at home, and b) sleeping on my back is uncomfortable and even painful from time to time. So I’m doing that next week.

A little news on another medical front: it turns out that even though I have most of August free, the OBGYN isn’t available for the D&C/ablation until September. In better news, however, he has decided that I can have both procedures at the same time, instead of two weeks apart. Scheduling-wise, this is a good thing, but I’m a little concerned that my manly-parts will need extra time to heal after such ‘abuse’. Right now, it’s scheduled for a week before a camping-in-cabins event where I have to be fairly active; we are actively trying to reschedule it for later, but my schedule really doesn’t have another big hole for recouperation until December. I have to decide if it’s more important to get it done sooner rather than later, or wait until I have copious enough time to heal at home. Like most things in my life, it will likely end up a compromise.

I’ve been having a fairly bad pain flare since I got home from Camp Out. For the first few days I was basically bed ridden and able to do little more than watch tv. My boyfriend came to visit and I was active while he was here (stop your dirty thinking…), and I also didn’t get the kind of sleep I’m used to (hey now…). I will tell you a secret: while he was here, I was smiling through a lot of pain. My desire to ‘live life’ was higher than my pain, so I tried as hard as I could to keep up.

I even went through with the plans to get a new tattoo – the funny part being that the pain in my legs hurt much worse that the ink – but I think I’m starting to pay for all my fakery. I feel like I might be coming down with a cold or the flu or something like that – a little sore throat, a little flu-like achyness (which doesn’t feel like my regular pain), my ear acting up – which is a typical Del-body response to pushing too hard. It probably didn’t help that I did a fair amount of spirit-work type stuff (channeling, etc) while he was here, and that always throws my body for a loop. I need to find a way to draw a boundary around how much of that happens while we’re together – he kinda relies on me for messages from his God, since his “god radio” is fuzzy at best, but at the same time I don’t want our relationship to become rooted in me doing spirit-work for him. There’s a post for SGRS coming up on this part of our relationship, mostly because I feel there’s a dirth of writing about being the partner of someone with a God-relationship.

I’m going to go into spoon-recovery mode for a few days, so if I’m not super responsive to email/FB/etc, you know why.

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8 Comments

  1. Ben P said,

    Neuroscience Man says: While I know a little about EMGs, they can potentially measure a lot of things, so I don’t know what a low EMG might entail. (Impaired neuromuscular function, natch, but I don’t think that’s news.) “Artifact” is definitely something wrong with the test: it’s when the test picks up something that’s caused by the test, rather than actually occurring in your body.

    Ben also says: Glad to hear you’re persevering and pushing forwards, and good luck!

  2. Elizabeth said,

    Elfy love to you! I’d send you some more tangible stuff, but given how you reacted to the test I don’t know if it’ll send you ticcing away, as it does some people šŸ˜›

  3. EVCelt said,

    Good to hear about the “good” results, and I hope that this develops into something that helps you… I’ll continue to keep the “help his doctors find the right diagnoses and treatments” in my prayers.

    Also happy to hear that they’re allowing you to do the sleep study while sleeping on your side (this neurologist sounds like a keeper). I sympathize- I also sleep only on my side, and can’t do more than nap with weird dreams if I’m forced to try to sleep on my back.

  4. Divine Twin Diversions said,

    I had one of those tests done to my leg years ago. It hurts like hell, you have my sympathy. For the record, they couldn’t find out what was wrong (a numbness in my left leg that is still there), but the memory of that test is still quite vivid. Hopefully you’ll have better luck and they’ll find some results.

  5. Eric S said,

    I had that test on my arms for carpal tunnel years ago. I agree it isn’t very pleasant. Best of luck!

  6. Elane Kinkle said,

    With regards to chronic pain, mindfulness meditation can really help a lot in reducing it. It is a bad idea to become dependent on pain killers. “;”:’

    Warmest regards http://www.healthmedicinelab.com“>

    • Del said,

      Hi Elane.

      You have obviously not read the rest of my blog at all, so let me give you a quick, personal introduction.

      I’m a meditation teacher. I am currently writing a book on meditation.

      I also take opiates to deal with my pain. It is currently one of many different therapies I use since my chronic pain is severe enough to limit my ability to perform daily life tasks. I practice meditation for two to three hours a day, and not just mindfulness, but also progressive muscle relaxation, guided imagery, and other healing modalities. Opiates are only one of several approaches I take towards my pain.

      I find the language “bad idea” to be judgmental of my health care choices, and of my decision to listen to both alliopathic as well as alternative healers. I have made it clear on the “About the Blog” page that I am not interested in hearing about alternate healing modalities unless you are a) schooled in the totatilty of my conditions, and b) a professional in the field. As I think you’re mostly spam anyway, I figure you didn’t take the time to get to know me or what I deal with, other than seeing the tag “chronic pain”.

      Thanks for stopping by.

  7. Bertram Hughe said,

    Carpal tunnel syndrome is a progressively painful hand and arm condition caused by a pinched nerve in your wrist. A number of factors can contribute to carpal tunnel syndrome, including the anatomy of your wrist, certain underlying health problems and possibly patterns of hand use. ‘

    The latest piece of writing straight from our blog
    <,http://www.healthmedicinelab.com/sun-poisoning-rash/

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