The Biopsy and Other Stuff

I had the muscle biopsy; it was an open biopsy with full anesthesia and was of my right deltoid muscle (bicep).

I'm a little dismayed that the desk attendant misinformed me. She said the biopsy would be on my thigh; therefore, when the nurse who came to insert the needle for my IV asked me where I was going to be cut, that's what I told her. She, thinking the hand we used didn't matter, tried to insert the needle into my right hand. I suppose it's a good thing she wasn't able to find a usable vein.

The nurses before the procedure were great, but those I dealt with afterward were rude, rude, rude. I came to awareness with one yelling at me because she was trying to change my gown and I hadn't been moving the way she wanted me to. After I asked for pain medication and had to wait half an hour for it, a second nurse lectured me about waiting "until a 5 became a 9 [on a 1 - 10 pain rating scale]" to ask for pain medicine. Um, I became conscious at an 8 and asked for pain medication then. Stuff it.

Instead of using the words or the tone I wanted to, however, I simply said, "I woke up in an 8." She then snarkily "reminded" me that I'd had a choice of whether to receive intravenous pain medication and stay in the recovery room an extra half hour, or to accept Tylenol 3 so that I could be moved into a room to see my husband. She was wrong, but this time I didn't even try to set her straight. The choice the original nurse (the one who yelled at me to move) had given me was between IV medication and Percoset. I've had Percoset. It works much better than Tylenol 3, and I'm not sure that I would have chosen Tylenol 3 had that been the alternative to the IV with which I was presented. Regardless, either medication should have been administered a good half hour before, at the time it was offered; instead, both nurses promised medication and left me sitting for several minutes while attending to other business.

I know medical professionals are busy, but that kind of behavior is inexcusable. Instead of saying, "I'm really busy right now; I'll get to it as soon as I can, but it might take a few minutes," the preferred alternative is to make a patient coming out of surgery wait and, unprovoked, accuse that patient of making bad choices? I hadn't nagged and hadn't criticized. I think the second nurse just felt the need to blame someone else for the time it took her to get the medicine to me, and when her first way of placing blame didn't work out, she moved on to a second to save face. Ridiculous.

It took several days for me to get a full range of arm motion back. I have a follow-up appointment tomorrow (the two week mark), but that's just to see how the incision is healing and to remove the stitches. I won't have the test results for another couple of weeks.

A few days before the biopsy, I got a terrible, noncontagious rash on my legs. Itchy red bumps. Oral steroids seem to have cleared it up.

I recently stumbled across information about a disorder called neuromyotonia, or Isaac's Syndrome. It consists of muscle fasciculations, muscle cramping, and extreme muscle tightness, and it's in the same family of disorders (peripheral nerve hyperexcitability disorders) as benign fasciculation syndrome and cramp fasciculation syndrome. It seems a tell-tale diagnostic sign is an abnormal EMG. I wanted to discuss this with my neurologist before the surgery (since muscle biopsies are sometimes useless for diagnosing Isaacs), but her receptionist told me she wanted me to make an appointment after I got the results of the muscle biopsy. I was kind of hoping to avoid being cut into if it wasn't necessary, but maybe she just wanted to explore all possibilities. Odd, though, since she previously seemed to want to order the biopsy only after exhausting all other possibilities.


Oh, the TENS machine really isn't all that. It feels good in the spots to which the electrodes attach, but any chain-reaction muscle tightening that happened before still happens now. For example, when I use my arm, my jaw still becomes painfully tight. Also, even though I may not feel pain in the muscles to which the electrodes are attached while the electrodes are attached, the muscles themselves still become sore from overuse. When the machine comes off, I'm in a lot of pain.

Test Results and General Update

Neuropsychiatric Evaluation: I didn't particularly present with anxiety, and my scores, according to the doctor, were very good. My overall IQ was in the high average range, and my verbal IQ was in the gifted range. My weaknesses were mathematics and spatial relationships. I had excellent recall. The recall result (99th percentile) just floored me; I was sure I had tanked that part of the test.

Unlike the doctor, I do not think my scores were very good. I think they were disastrous and completely prove my point that something cognitive is happening. Years ago, my IQ tested in the gifted range overall, and the number was much higher than the verbal score I just received. People shouldn't lose IQ points; it's possible to get a score that's a few points off (15 at most, from what I've read) under normal circumstances, but a score shouldn't be this drastically different. A score that is high average looks great to a tester who doesn't know what my cognitive abilities used to be. But it depresses the hell out of me. I didn't even bother arguing with the doctor when he gave me my results. I don't have proof of my former score, and I don't want to be seen as an obstinate patient. But when I get this all figured out and my thinking has become more clear, I will be taking another test, even if I have to do it at my own expense.

Latest Blood Tests: They came back negative.

Muscle Biopsy: The surgeon insists on a consultation before he'll schedule the surgery. I have that initial appointment scheduled for early next month.

Physical Therapist: Not a total waste of time. I think the exercises will be, because my issue is not one of strength but of endurance, but I'll be cooperative and do them.

The real boon, though, is that I'm being prescribed a Transcutaneous Electrical Nerve Stimulator (TENS) machine. It's an electrical muscle stimulation machine. The therapist said point blank that it doesn't change whatever process in the body is causing pain, but it "covers up" the pain with other sensations. An acupuncturist I once saw used this on me. It has no lasting effect, but it feels wonderful when it's being used. I'll be able to wear my portable machine (which I'm picking up tomorrow) during most routine activities, so I'll be able to get more done. Thankfully.

Epidurals: Still not working. The doctor said if this last shot didn't work, we'd have to look at other options. At this point, I'm not willing to bother. I just don't have the time or energy to chase more than one treatment at a time, and I know that I'll at least get some relief with the device I'm getting from the physical therapist.

My sleep is awful. My primary care physician has wanted to put me on sleeping pills, and I've resisted. I think I'm going to call and ask for that prescription after all [author's note: I changed my mind about this and never asked for sleeping pills]. My sleeping patterns are almost completely backward. Completely backward, I could adjust to and work with. Almost completely backward is something else entirely and leave me unable to even guess at what my energy levels will be.

That's it. I guess this all sounds pretty dismal, but I'm actually feeling optimistic. With the TENS machine, I'll be able to get more work done. And I still suspect that severe sleep deprivation/the wrong kind of sleep is causing a lot of my cognitive problems. With the sleeping pills, I'll be able to get on a schedule and, hopefully, get some of my energy and brain function back.

Epidurals and Psych Testing, Oh Boy!

My primary care physician still thinks it's possible that pinched nerves in my cervical spine are causing some (but definitely not all) of the symptoms in my arms. To that end, he sent me to a pain specialist for an epidural of cortisone. The idea is that the cortisone, one injected into the spine, will disperse through the canals coming off of the spine and shrink any tissue that happens to be inflamed and is pinching the nerves. Sometimes the effect lasts for months, and sometimes it is a permanent fix.

There is a little guesswork involved in finding the very spot to inject the medicine, however, and sometimes it's necessary to get more than one shot. The first shot, which I had more than a week ago, has not helped. I will get another in a few days.

I also had some psychological testing the other day. There were two reasons for this. The first reason is that I want to swiftly and surely shut down any "it's all in her head" arguments by having evidence that I'm completely mentally healthy. I was pretty laid back and kept my sense of humor about me when taking the tests, so I really don't think they're going to show any abnormal stress or anxiety.

The second reason is that I want to have a baseline, a record documenting my mental acuity right now so that it will be easy to see if that acuity changes in the future.

My gut feeling about the testing is that I scored well verbally, was weak with spatial relationships (never a strong suit), showed mathematical proficiency but not much else (what would I expect after being out of school for so long?), and demonstrated some severe weaknesses where memory is concerned. But those are just my guesses; I won't know the results for possibly as long as two months.

I have a followup appointment with my new neurologist the day before the second epidural. She told me at my last visit that if the bloodwork she ordered all came back negative, she'd be ordering a muscle biopsy. I know from my primary care physician that all of my bloodwork was negative, so I'm guessing a muscle biopsy is in my future. I'd love the idea if muscle biopsies generally solved such medical mysteries as mine. From what I've read, though, it seems they're like all the blood tests I've had - they may or may not show something that a person may or may not have.

I'll update the blog when I know more. Or when I know only exactly what I know now but have another test result.

Nice Having an Answer while It Lasted

According to two different neurologists, the problem is not cervical spondylosis; my spondylosis is just too mild. The first neurologist was completely dismissive in general, but agreed to order a nerve conduction velocity/electromyography (NCV/EMG) study anyway. He was certain the tests would come back negative.

The NCV was negative, but the EMG was not. And the neurologist administering the test was not dismissive at all, so I'll be seeing her from now on.

I saw her yesterday, in fact. She said the tests show no sign of motor neuron disease (a very good thing), but that they show more fibrillations than fasciculations. Had they shown nothing, or fasciculations only, it might have indicated something called cramp fasciculation syndrome (CFS). In fact, the doctor still brought it up as a possibility, but I've read up on the syndrome and know that it doesn't account for some of my symptoms; when I told her this, she agreed and took that diagnosis off the table.

She's ordered a spate of blood tests that don't often get ordered, more specialized tests to look for Sjogren's, lead poisoning, sarcoidosis, and all kinds of other stuff, and she's also ordered an MRI of my lumbar spine. If everything comes back negative, she'll be ordering a muscle biopsy.

Bam! Found Something; Can't Believe I Didn't Think of It Before

Must be the sleep deprivation.

Yes, that's it - sleep deprivation!

I've obviously slept in the past dozen years, but I haven't slept well. I average about five hours of restless sleep a night, and sometimes I take long (one- or two-hour) naps. Even if I napped daily (I don't), I wouldn't be getting my eight hours in. Now, it's true that many people don't need eight hours. But even people who don't need much sleep need good sleep in order to function properly.

My sleep isn't good sleep. I probably don't sleep deeply more than once or twice a week. Most of the time, even as I'm sleeping I feel like I'm semiconscious; I often recall looking at the clock every hour, though I don't recall the time in between these looks.

Sleep deprivation can cause serious cognitive impairment and, yes, even aphasias. It can even cause clumsiness, vertigo, and dizziness - so I guess it's kind of a tossup whether those symptoms are being caused by my spondylosis or just my lack of sleep.

Yay! I might get my life back!!!

I Might Have an Answer

The cervical spine MRI showed cervical spondylosis, or degeneration of my spinal joints. These joints have formed bone spurs, which are taking up room and making less room for my nerve passageways.

I have "minimal" canal stenosis, or narrowing of the spinal canal, and "mild to moderate" neural foraminal narrowing, which is narrowing of the passageways that lead off the spinal canal.

Limb (arm and leg) pain, numbness, and parasthesias are symptoms, as are balance and gait problems and bladder and bowel incontinence. Fatigue and dizziness can be caused by spondylosis as well, but I've had a much harder time finding scientific evidence that hormonal dysregulation, muscle fasciculations, and semantic paraphasia can result. I have seen a few papers and articles that deal with all of these issues except aphasia in the general context of spinal cord damage, though, so I'm hoping everything is related. It's hard not to think that even the aphasia is related, since it's been a problem only since all my other symptoms have become unbearable this year.

I have an appointment with a neurologist in early January, so I'll ask him my questions and discuss treatment options (which can evidently range from cervical collars to surgery) then.

Latest Doctor Visit

I said in an earlier comment that my arms showed no reflexes when tested at a previous doctor visit. Well, thankfully, this time both arms tested fine. My doctor explained that if a patient is nervous or tense, his or her reflexes will often be subdued.

My legs showed hyperreflexia, though, which the doctor said may or may not mean something. He said hyperreflexia is seen across all disorders that affect the upper motor neurons, but is also commonly seen in the population at large.

My labwork all came back normal. My vitamin D was 39.9, which is good; it's at the lower end of normal. However, I take high doses of a vitamin D3 supplement (5,000 IU [international units] three or four days a week), so it seems a little odd to me that I'm not on the higher end of the scale. My doctor didn't seem too concerned, though; he just told me to continue with the high doses.

The doctor said that for now we'll look at my symptoms separately, since an overarching cause isn't clear. I don't really like that, since I'm certain there is one problem at the root of all my symptoms, but since he's the first doctor to take me really seriously and continue looking for an answer when one isn't immediately apparent, we'll do things his way. Who knows, maybe by looking at things in more detail, we'll start seeing clues that have been overlooked.

The doctor is ordering a cervical MRI to make sure I don't have pinched nerves in my neck (I've actually wondered about this myself, but there is just so much other stuff going on that it seems like it has to be connected). He's also sending me to another neurologist; he says this guy is really good and takes his time listening to his patients.

That's it, really. No news, but I wasn't really expecting any so soon.