Tuesday, May 19, 2015

Morbus non Gratus

NOTE: I should have reposted this essay earlier, as I believe I cite it in at least a few other essays I have reproduced from the defunct "Random Notes" blog.  However, since I mentioned it today in my most recent post, i have decided to finally copy it over from my backup copy of my former blog. As will be obvious to those reading it, this essay has nothing to do with politics or economics. It is mainly a lengthy description of the many issues I faced after falling ill. However, since I hate repeating those descriptions, I find it easiest to simply reproduce this and then link to it whenever I need to mention my ailments.


I posted this late last night, while feeling particularly ill. After a little bit of fitful sleep, and feeling a bit better, I deleted it, as it seemed a little self indulgent. And it is. But it is also something I want to have in print somewhere. I am not sure why, but it is something I have to say somewhere, to someone. So many people know bits and pieces of it, but I don't think anyone is aware of the whole course of my illness, especially since my wife left and divorced me in the last two years. So, though it is self indulgent, and is truly off topic and irrelevant, I am posting it once again. As the introduction says, please skip it if you wish, it won't help your understanding the blog at all, nor will it clarify anything about politics or economics, the official topics of this blog. But as I don't have a personal blog for such irrelevancies, I guess it gets posted here. Please forgive me this small bit of self indulgence.

Oh, and if anyone is curious, the title is as close as I can come in Latin to "unwelcome illness", somewhat of a parody of "persona non grata", as I felt rather unwelcome when visiting many of the doctors about whom I complain below, so combining the idea of an illness I find annoying, with the idea that many doctors would rather I had not darkened their doorstep, it seemed the best title. Again, a bit self indulgent, especially for the amateur classicist in me, but not completely inappropriate.

Morbus non Gratus

This post is quite off topic, so please disregard it if you wish, it will tell you nothing about politics or economics or any of my normal topics. I am simply fed up with being sick, and since I fell bad about burdening those around me with all the gory details of my disorder I feel the need to tell someone, and the anonymous "someone" of the internet is my "someone."

First of all, I am still angry that it took doctors five years to figure out what was wrong. Not to mention that they gave it to me in the first place, or at least triggered it. Well, perhaps some details might help there. I had small back problems, not unusual for a desk jockey hitting forty. And the back doctors decided to give me steroid injections in the spine. After the first one, I felt funny. Really funny. My ears rang, my mouth was dry. I recalled they were all signs my diabetic relatives said they watched for, and, since my wife was pregnant, I used her glucose meter and found my blood sugar was over 200. I had played with it before (as my family has some history of diabetes) and never got above about 110 (if that high, it has been over 7 years now, so bear with me...), so it wasn't that I was diabetic. In any case, I called the outpatient surgical center, an they said no way steroids could cause such problems.

But that is not why I say they caused my problem, that was just one of the reasons I think I distrust this center. You see, after a month of saying I would not submit to such things again, I went back and had the three shots done. And my back felt fine. And then, three months later, my feet started to feel funny. First numb, then "gritty", like there was always dirt on them. Finally, they began to burn, then to feel cold and numb. About six months later, I was driving to work, sitting caught in traffic, when my legs went numb, then started to twitch, and my bladder let loose. (Sorry for the gory details here and to come, but they are important.) I drove myself home and started seeking out neurologists.

Neurologists started various medicines. They gave me trileptal for the spasms. Tried neurontin, Lyrica, a bunch of others for the pain. And they (grudgingly) gave me opiates for the increasing pain in my feet, which later spread to my hands, and returned to my back. But, they also used only vicodin or percocet, so the relief lasted about 2 hours after I took the pill, meaning I was always either in pain, or taking "too much", risking overdose and running out early. And they would cut me off. I went through opiate withdrawal three times in one year thanks to that. (Well, once was voluntarily, when my back pain stopped. I just discontinued my pain medication rather than "taper down", as I reasoned I would rather be really sick for a few days than a little sick for a lot of time. But the other two were involuntary, and coupled with excruciating pain.) I went to see experts, I went to Hopkins, I went to hospitals in DC. Someone wanted to implant a spinal nerve stimulator. Another a spinal pump to give pain medication. I reacted badly to medicines, thought I had a heart attack when I took clonidine. (Apparently, baclofen, clonidine and a pain killer is a common treatment for nerve pain. I still take baclofen, as it stops painful spasms in my feet and hands, and prevents the overnight twitching which tired out my muscles, leaving my feet and hands terribly cramped in the morning and making it painful to walk when I awoke, but obviously did not continue taking clonidine.)

And that was what finally made me a bit leery of neurology. One doctor at the University of Maryland doubled my Lyrica and trileptal. When that happened, I became so sensitive to sunlight, I was wearing sunglasses inside with the shades drawn. My arms and legs had all sorts of strange phantom sensations, and I became so confused questions such as "what do you want to eat" reduced me to tears. I recalled a few other medicines had produced similar reactions. When on one, I could operate normally, but strange things would happen from time to time, like typing an email which read normally except it was missing all the "o"s. I frequently had days where food would not seem to digest right, it would sit in my stomach until I threw it up, and it came out mostly undigested.  A whole number of unpleasant side effects. And so I stopped agreeing to take whatever they threw my way. I got some pressure, implied threats they would cut off the opiates if I didn't take something else with them, but I held firm. (This is when I started writing about the arbitrary legal power control of prescriptions gives doctors, and you can probably now see why.) I could write pages about how doctors manipulate patients, about being called a "drug seeker" and thrown out of a doctor's office, about the little indignities pharmacists heap on patients they dislike for one reason or another, the way insurers can deny you prescription coverage even when you offer to pay out of pocket (never figured out how that worked...), all the things most people don't experience in the medical system because they don't deal with it often enough, but I will spare you. 

Anyway, after about three years, I found a good pain doctor, who thought I might have RSD/CRPS. It matched some of my symptoms, but not all. I didn't have the burning skin, or did but only sometimes, and the deep seated pain I had didn't quite match. But it was the closest I could come to a diagnosis, without being shunted off into the "we don't know" diagnosis of "small fiber neuropathy" (which like "COPD" is just a diagnosis-by-symptom, like saying "John has a fever" it tells you nothing). I had several nerve blocks (kind of painful, as they involve injecting into the spine in the hip or neck), tried a spinal cord stimulator, had a lidocaine infusion, even considered trying to find one of those "ketamine coma" drug trials to see if ti would help, but there were none in my area. At last, the doctor handed me off to the doctor in DC who did spinal pumps, as he thought it my best option.

But I work with computers, and I know everything has "never failed" until it does, and I worried that having something that could cause an overdose by administering right into my spine, even while I was asleep, would scare me so much I would never sleep again. I would spend my life awake and watching for signs of OD. I again got a lot of pressure, and a lot of brochure PR about testing and foolproof hardware and the like. But nothing I heard was foolproof enough to convince me. And so I jumped pain doctors again, at the same time I found a new neurologist for the first time.

That brings us to my current pain doctor, or practice rather, as I have seen several individuals there, and they are agreeable. They said it was good to avoid the pump, as no doctor wants to touch another doctor's pump, so if my doctor ever retired or moved, I might never find anyone to refill it, which could be a problem. They are a bit paranoid, dealing with pain meds, so I get to go back monthly for my opiate refills, and I get urine tests about every three months, but with the government being so crazy about opiates, I can live with it. It beats withdrawal and ineffective medications. (Though, I still get funny looks from pharmacists, as I found methadone the best pain reliever. In most people's minds, that is still the drug addicts get, so sometimes when I drop off or pick up my prescriptions I get some funny looks. One doctor even offered to add "for pain relief" to the prescription -- and I hadn't said anything to suggest doing so. But, by now, I find I would miss the funny looks, so I turned down the offer.)

Now, about the new neurologist, and the reason I say the surgical center gave me my problems.

My neurologist saw my hairless, discolored feet and balding hands and said "nerve damage", and from the orange color thought "liver". Both turned out to be right. (After almost six years of doctors puzzling over why I was in 'too much pain'  -- and sometimes implying I was faking or exaggerating -- I finally had a nerve biopsy which showed pretty serious nerve damage in my feet and legs.) After a slew of blood tests though, the only thing noticeable was a high, but inconclusive number for Hepatitis C. Which is odd, as right before the outpatient surgery, I had been tested for everything in the world, and was negative, and nothing in my life between those two dates would have given me hepatitis. However, we tested again, and again, and all were elevated, so I had it, just very weakly.

And so, for a year, I took interferon injections in my stomach once a week, and ribovirin twice a day. I was sick like someone undergoing chemotherapy. I lost weight. I felt horrible. But I also got to see a good hepatologist/gastroenterologist.

Which was useful, as my (now ex-) wife noticed something. When, we were sitting in the sun watching the neighborhood kids put on some performance, I got confused, really confused. And  was not the first time. Then I recalled how Lyrica had made me so sensitive to the sun. And that a rheumatologist we had seen sometime in this process had noted a massive deficiency of Vitamin D (though I wrote it off to my nocturnal habits). Eventually, as I began to self diagnose, I started to think that it sounded like prophyria. It was not a great fit. I didn't blister in the sun. I lacked some symptoms. I had been  a heavy drinker in my past, so it should have been obvious then. No one in my family had it, and a lot of cases are inherited. But it was worth testing.

My neurologist and hepatologist agreed, and I gather urine for 24 hours. And the results were... inconclusive. "three times elevated", but it need to be five for a positive. But that elevated level seemed odd to me. healthy people don't carry around all those extra porphyrins, so I was sure I was onto something. So I kept asking for a new test, and took one, and... same thing. But the hepatologist thought it odd enough to send me to a hematologist. And when I did the test for him, I took precautions. I sat in the sun. I smoked three or four time as much as normal. I ate peanut butter sandwiches every few hours (as I noticed they seemed to coincide with some episodes of abdominal pain). I drank caffeinated beverages. I did everything but drink alcohol and take stimulants to trigger an attack. And I felt rotten. But I got a positive result.

Unfortunately, we forgot to freeze a fraction of the sample, so it could not tell which type of intermittent porphyria, just that I had intermittent porphyria.

Now, my hepatologist said porphyria is not unusual with those who have hepatitis C, so he expected it to go away with treatment, but I took the year long course, tested negative for hepatitis, but still had symptoms. Six months later, still negative, but even more ill. So, though it looks like the hepatitis triggered it, it is here to stay. And, since the hepatitis seems to coincide with a really bad outpatient surgical experience, I am prone to blame that for the hepatitis, though obviously nothing I can prove. (A year or two back, they released results of a government survey of Maryland outpatient surgical centers and, interestingly, found a very high number of accidental hepatitis transmissions.  Again, not proof, but that I tested negative before does make me wonder.)

And the reason I think it troubles me is that now I have permanent and painful nerve damage in my hands and feet, partly caused by all those porphyria attacks I had as reactions to the medications I took. Had I been diagnosed a little quicker, perhaps the pain would be less, or the nerve damage would at least have been limited to my feet. Instead, for over two years I was in a state of off and on porphyria attacks thanks to my treatment regimen. And that is upsetting.

And now it gets worse.

Before, I was not so bad. A lot of very bright sunlight would cause confusion, maybe sharp pains in my abdomen if I was out too long. If I smoked too much the same. Caffeine wasn't a big trigger, but I am not a coffee drinker, so my amount of caffeine is limited to soda, of which I drink less than I did when younger. Alcohol is a non-issue. I think since this all started I have had drinks on maybe five or six occasions, and the most I drank was a pint and a little more of Guinness. Between feeling terrible and taking large amounts of opiates, alcohol is just not that appealing. I had champagne at New Years twice, and a pint of Guinness, which I rarely finished, maybe three more. So the big trigger for me is protein. Fortunately, I am vegetarian, so this is not as big an issue, but it does present problems. Being vegetarian, you get obsessed with making sure you get protein. And now, I have to avoid it. But make sure I still get some.And it is a strange experience.

About a year ago, if I ate, say, a peanut butter sandwich, I would feel a bit ill, maybe have some pains in my abdomen, and get groggy about fifteen to twenty minutes later. Sometimes I would fall asleep suddenly, even while working. (My doctors wanted to call this sleep apnea before my diagnosis. I took the test, and it was positive. But I have stopped breathing in my sleep since I was 18. An old girl friend used to wake me up every night worried I had died. I only fall asleep now after 20 years of doing that? And I only do it after I eat certain foods. I do not wake up sleepy, I don't wake up in the night. I don't have trouble falling asleep. None of the symptoms of sleep apnea problems. Just extreme sleepiness after eating protein. I don't recall food-mediated sleep apnea being a disease. But I just let that go and stopped asking about it, as they wanted me to use the CPAP, which makes me feel like I am breathing mud, and I don't want to be a "noncompliant patient" again. I am just tired of fighting doctors.)

Anyway, allow me to describe the progression. A few details are a bit grotesque as they involve regurgitation, so feel free to skip ahead.

As I said, a year ago, when I ate peanut butter, I would feel some discomfort, maybe pain, and sometimes fall asleep. Then it began to progress. I would now always fall asleep. Sometimes badly enough that I would fall asleep smoking, burn myself, and not wake up until the burn was pretty severe. (At that point I took to always standing when I smoked.) I would also sometimes fall asleep even while walking, I fell often, once cutting my head on my son's Legos, and once bruising some ribs on my desk. But, again, only after eating high protein foods. (OK, once or twice stress brought it on, but I chain smoke when stressed, so that could be nicotine not stress.) A few times I would wake up with bile dripping from my nostrils, and my nasal passages burning. It was odd bile too, a dark purple-black color and very chemical in odor, not like normal vomit. But perhaps that was just because I am not used to throwing up through my nose. Or wasn't until this started.

Now, it has progressed more. I generally avoid protein unless it is mixed with a lot of bread or other carbs, so it digests very slowly and in small amounts, but event hen I judge wrong sometimes. Or forget and eat something I shouldn't. Just recently, I spent two days feeling ill because of a peanut butter sandwich (they are my strange guilty pleasure. For some reason, a PB&J is an oddly comforting food to me. Painful as they have become.). I felt like I was drunk. I would pass out, and wake up, confused as to time and location. I would would vomit through my nose several times a day when asleep. (And once or twice when awake.) Once I woke up to find myself sitting on my sofa with my mouth full of partly digested food and my nose stinging again. In general, I feel like a chronic alcoholic without any of the dubious upside of that life.

On the positive side, all my liver levels were normal when last I saw my doctor, so I assume I am mostly healthy, except for this. But still, it is annoying. And, of course, in addition to all this, I still have the nerve damage in my arms and legs and hands and feet, which is usually controlled by medicine, but sometimes flares up and leaves me incapacitated. But other than that, guess I can't complain. Since at one time they worried I had MS or ALS, that I might have had conditions requiring a live transplant or worse, and I did cure my Hepatitis C, so I don't have that any longer. So things could be much worse. Still, I have to complain some times, and this is the one and only time I will do it here.

And having unburdened myself of those complaints, and decided that things could be much worse, let me repeat that is the last time I will bother this blog with such irrelevant details, and I will return to the much more interesting topics I usually cover.

And, by the way, before anyone tells me Hepatitis C can test negative for a long time even if you are positive, I am aware of that, but the timing still troubles me, as my nerve damage started about 3 months after the injection, and my tests prior to the injection being negative, the circumstantial evidence just makes me wonder. I am not about to sue anyone, or even say with certainty they are to blame, I am just, in my own mind, fairly sure the cause is to be found in either the bad injection, or the one of the three subsequent injections.


For those who bothered to suffer through this lengthy digression, allow me to offer one bit of solace, I am going to try to post my stupid quote for the day a bit earlier than usual, so no need to wait for near midnight to read it. Hopefully I will have it up by 9 or even 8 tonight.

Originally posted in Random Notes on 2012/01/07.

NOTE: Since writing this, I have started blistering from sunlight. It is not very severe, it takes a lengthy exposure, and usually produces only one or maybe two tiny round and painless blisters on my arms, but it has started. In addition, the other problems described have also worsened to a degree. But, for the most part, the descriptions in this essay are accurate, and my present condition is quite similar to that described, though perhaps a bit more uncomfortable.

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