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Today I had an actual appointment with a neurologist

January 11, 2012

This is the first time that I’ve seen a neurologist since late 2007. As it turns out, Robert Wood Johnson has a neurology clinic, where they see poor and uninsured patients for a vastly reduced fee. (It cost just $67, which is something even I can afford.) The meeting was very thorough; the resident also brought in the attending, which meant that there was two adults’ worth of neurological expertise paying attention to the three issues that had brought me there: pain, spasticity, and my left hand tremor..

The first issue, and the most pressing, was the increase I’ve been feeling in the actual pain caused by CPS. I’ve come to believe that CPS pain has “scope creep”: it begins to increase its area of affect, and its intensity, over time. The only way to keep it from becoming unmanageable is to keep a very careful limit of its spread by using drugs persistently. I’ve counted on gabapentin to keep me sane, but lately the “Constant Level 3” pain has turned into “Level 3 with Frequent Spikes” to 5, 6 or more. I’ve been toughing it out for months, figuring that I can take 6 or more hours of higher pain levels at 6 or 7 at night, even if it does prevent me getting to sleep or working. “What can’t be cured must be endured,” is one of my mottoes. The faith and the family that I was raised in made a sort of  fetish of pain – the more you suffered, the more God was giving you an opportunity to live a saintly life. As my mother said about living with pain, “Offer it up for the souls in purgatory.” (She probably learned it from her mother, and the nuns in her Catholic schools.)

But it turns out that living in pain is very destructive to the actual human body. Chronic pain makes smaller brains – your brain actually shrinks. “Loss in brain density is related to pain duration, indicating that 1.3 cubic centimeters of gray matter…are lost for every year of chronic pain.” Pain levels are also related to high blood pressure, in direct proportion in my case. I found this out while I was in the Intensive Care Unit for two days, recovering from my respiratory events. Being on a constant monitor, with my blood pressure being taken every 15 minutes, meant that I could see immediately the relation between increased pain levels and BP. The greater the pain, the higher the BP. So when I saw my doctor in early December, I asked her to increase my gabapentin.from 600 mg x4 daily, to 800 mg x 4, she said, “You’re on so many meds now that I need someone else to evaluate them all. I want you to go to the neurology clinic.”

So off I went to the Neurology Clinic. What a relief to hear both the resident, Dr Velez, and the attending physician,  Dr Schneider, state that they were familiar with Central Pain! Dr Schneider said that he had “a lot” of patients who suffered from it, because it was caused by so many events. (He expressed surprise when I told him that many of the CPSA members had doctors that had never even heard of CPS.) Dr. Schneider was a man in his 40s, trim and thin, with a long ponytail that made him look like a refugee from the ’70s or an internet entrepreneur. Knowledgeable, gregarious and patient, he was obviously used to talking with patients who didn’t understand the terminology. He explained things in detail, yet felt it necessary to explain to me that his references to the “anterior cingulate gyrus” and the “substantia nigra” were to parts of the brain. At one point I mentioned that CPS was neurological in origin, and he kindly explained to me that all pain was neurological, because it was caused by the brain’s interpretation of sensations carried by the nerves. We talked about the various treatments for the CPS, and he explained that merely raising my gabapentin level wouldn’t necessarily bring more relief. Gabapentin is absorbed in the gut, and he stated that there were a limited number of receptor sites. Once those sites were being utilized, the additional drug wouldn’t be taken up. He stated that their team had found better results in pain reduction by combining gabapentin with some other anti-convulsant. This was of tremendous interest to me, since knowing what works is news that the entire CPSA could use. He explained that there were a variety of anti-convulsants, and that usually it took a combination of them to find the right level of relief . How many of our members have two anti-convulsants in their cocktail?  Usually it a combo of anti-convulsant and anti-depressant, like mine. (He also said that my amitriptyline dosage – 25 mg – was extremely low for treatment of CPS, and that it could easily be doubled.)

But the Dr Schneider told me that my best bet would be to meet with doctors in yet another department at RWJ, the Pain Department. Yes, there is a whole department devoted to patients suffering from chronic pain. Now, may of you from the CPSA know that “Pain Departments” are often horrible dead ends for us. Their purpose consists of, apparently, one thing: getting people to kick their opiates. They treat everyone who enters as a person with a drug dependency, who only needs to think that correct way in order to get off the patch, pill, smoke or needle. I’ve read a dozen, if I’ve read one, testimonies from our members who were referred to pain Department, unceremoniously ripped from all their pain meds, and theoretically detoxed. They all end up the same way: with the patient sick and in agony, being scolded by someone who told them that they weren’t working hard enough to get a bit familiar with the Pain Department, because one of their Fellows came to see me, also while I was in the ICU. He actually knew a great deal about Central Pain! We discussed it for a while, and he explained the purpose of the “Pain Department.” It was apparently founded by means of a NJ stat grant, with its primary purpose being to assist chronic pain patients in weaning themselves off of opiate drugs (or at least attempting to.) However, it turns out that there are some forms of pain that cannot be ameliorated with behavioral methods, such as distraction or self-hypnosis. Central Pain Syndrome is one of them; that was part of the reason that the Fellow was so interested in it. He explained that the three attending physicians in the Department were not that familiar with it. I’d taken his card, hoping that I could meet with the Department doctors sometime in the new year, in order to discuss creating an advocacy organization for CPS. Well, now I have two reasons to toddle off there:

But now I return to the meeting today. The neurologists today were most “intrigued” by the tremor of my left hand, something that I’ve had since the stroke. It’s been an irritation and a hindrance to me, because my hand shakes so badly that I can’t thread a needle, cut up vegetables, hold something steady in one hand while I work on it with the other, or carry an uncovered beverage in my left hand without dousing myself with the liquid. The tremor is fascinating to neurologists because they can’t ascertain the cause. Neurologists that have seen me during my hospital stays have also paid a great deal of attention to it for the same reason. It’s not Parkinson’s, being one-sided. It’s not a “rubral tremor,” because that involves damage to the midbrain – which doesn’t show up on my MRI. It’s not dystonia, because you can end the “shakes” of dystonia by placing the limb into a resting position. Whatever it is, however, they figure that it may respond to yet another medication, klonopin. The only problem with this one is that it causes “sudden sleep.” This makes it a bedtime dosage, definitely.

The appointment today was a long one – over two hours. There were long portions of time, however, when I was left alone while they discussed things outside of the consulting room. While they were away, I took a look at all the wonderful pamphlets and learning materials that were available there to ALS patients – people that suffer from Amytrophic Lateral Sclerosis, or Lou Gehrig’s Disease. The wall racks in the waiting room were full of brochures and pamphlets from the ALS Association: “Leading the Way in ALS Research,”  “Vision: Creating a World Without ALS,” “Research ALS Today,” “Patient Guide to the ALS Registry.’ I looked through the beautifully-produced, 8-page glossy brochures which celebrated the millions of dollars in research grants looking for patients, new treatments, or funding-raising walkathons. ALS is a terrible, debilitating, fatal disease, with a life expectancy or two to five years after diagnosis. “Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.” It is thought probable that there are about a million and a half of us with CPS living in the US right now, and I wondered where our patient advocacy group was.

When Dr Schenider and Dr Velez returned, I asked them about their advice as to how to go about forming such a group. Both were surprised (again) that there wasn’t such a group now. (I am realizing more and more that even doctors who know about CPS don’t understand it the way that people like Mary and I, who have been working with the Alliance for a while, have come to comprehend the patients’ situations and needs, and the state of treatment opportunities in the US.) Both agreed (who wouldn’t?) that such a group would be useful and vital. Dr Schneider’s suggestion was to contact the national pain organizations, such as the American Pain Foundation, and get their suggestions. In addition, he suggested contacting the drug companies that manufacture some of the treatment drugs, such as Lyrica (manufactured by Pfizer) or Tegretol (which I believe is out of patent) to find out if either would be willing to donate. I brought the ALS printed goods home. The ALS Association has been in existence at least 20 years. What will the materials produced by a 501(c)3 CPSA look like? I intend to live at least long enough to find out.

That intention to live a long life with some semblance of health means that I I will have to go to yet another department of Robert Wood Johnson, the Pain Department, to get any assistance with controlling my pain. Nor could they do anything for my gait and left-side “posturing,” as they called it. So, after 2 hours, I left with a prescription for klonopin, a referral to the Pain Department, and some suggestions for contacts to start the 501(c)3.

But there was one other enduring effect of this appointment: the heartening assurance that slowly, bit by bit, Central Pain Syndrome is being recognized by some members of the medical field. But more on that tomorrow.

One Comment leave one →
  1. Eileen permalink
    January 11, 2012 11:22 PM

    Thanks for the iinfo and feedback on the Neurology Dept,… I have heard good things about then, and hope that they will be able to offer you SOME relief. Having constant pain,
    even if it is not a level 8-10 is exhausting…..

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