This is Part 8 of a story I'd love you to read. But please, please darling, start from the Part 1., here.
Part 8.
Pseudo Care.
They had kindly decided that no, I did not need my medication without still, yet, and in the end, never, reading any of the papers explaining why I really need my medication, even though I had given them to the chief neurologist and pretty much to the whole personnel of the health care system, prior to my arrival and then again in the hospital. In the end, they decided it wouldn’t look good to send me home with empty hands, there were too many authoritative eyes watching. So, they’d give me, for a week or two, a recipe for ephedrine which would, according to them, boost my autonomic nervous system adrenalin-like, a bit like the medicine I was asking re-prescription for. I knew ephedrine, of course I did; it’s commonly used in myasthenia gravis. What I also knew that it would not ever work the way my medical treatment did, otherwise I’d certainly had asked for this option ages ago. But ephedrine recipe I was to have – for one or two weeks. Which kind of makes one wonder, what I was supposed to do after that week or two? Stop breathing?
Even at the point the idea of ephedrine was introduced to me, I wasn’t told they would not rewrite my prescriptions. They told me they’d like to see if ephedrine works. At that point I had been in hospital for days, being mistreated, neglected, abused, and all I wanted was to get out. I said yes, of course. I’d test. I did not want to be a difficult patient, and I wanted to collaborate, find a solution out.
It turned out they hadn’t any ephedrine in the whole wide central hospital. (Which is kind of hard to believe, as ephedrine is, as I said, commonly used in myasthenia gravis. And we were in a neurological ward, in a central hospital of our region.) But they couldn’t find any ephedrine, and they told me they’ll get some for the next day. At which point I really lost all my hope for getting home soon. I knew there were nationwide problems getting ephedrine at that moment and there was this one ephedrine product only available in Finland. I did tell the personnel to go for that one as nothing seemed to be simple or straightforward or easy there, so I did not, for a minute, dare to hope they knew about this ephedrine case in the neurological ward – which they didn’t, of course. I was shrugged off as an annoyingly stubborn patient repeating something irrelevant, they knew better. Until they had to make several phone calls to get the product ordered.
It took a couple of agonising, endless more days in there, waiting for the medicine to arrive. Days I longed for safety, to get out. While waiting for ephedrine to arrive, they had this excellent idea of replacing ephedrine with Duact capsules, widely used in Finland for cold and allergic rhinitis. Duact included pseudoephedrine and should work something in the lines of ephedrine, they hoped. At least they wanted to test. (Which makes me ask how come they refused to rewrite my prescription because my treatment was not widely used but only based on medical research, but then were willing to test not only one but two medicines to see “if” they work.)
So, I had Duact twice. Except, I didn’t.
According to my medical files, I was not given anything. According to my case report (the records personnel kept while I was staying at the hospital), I got Duact, twice. This is one of the few things actually written in my case report; that I had had Duact as substitute to ephedrine. But in reality, I was given something else, two times, actually, as in both cases I was given something that was not Duact, but something that also differed from each other. There is no mention of any of this in my medical files. Also, they forgot to mention anywhere I had ephedrine after these “Duacts”, three times, in three days. Not a single mention. And there is definitely no mention about the fact that either they gave me wrong medicine on purpose or then purely by accident.
It is highly important and very, very much obliged and regulated to be absolutely accurate with documenting all the medicines given to patients at hospital. There is no room for mistakes, no room for carelessness, which is very understandable, if you think about it. But I had been given twice something that turned out to be a wrong medicine, and then another medicine three times, without a single record left in any documentation.
An Old Testament researcher loves to use the word omit, and I certainly use it now. I think such mistakes and omitting leaves one quite a serious question hanging in the air; how many other things are not written down at all, or are written incorrectly? In my files, in other patients’ files? How usual this is, how often this happens to others, too?
According to my husband’s notes, I had said repeatedly to him, repeatedly, after given these “Duact” capsules that I feel drugged and disoriented and drowsy. I was completely out of bounds hours on end, and I have no idea if I have been unconscious or just sleeping so extremely deeply and well, suddenly, that I could not and cannot tell what happened meanwhile. After all these other details, especially revealed afterwards, I really am underlining the uncertainty. I have no idea what happened when I was either sleeping or unconscious. I am not indicating there happened anything sinister, that is not what I mean. I mean, in a situation when I had had serious difficulties to sleep, to rest, when every single noise or movement woke me up or prevented me sleeping, when even at home I wake up when my husband turns in his side of the bed, suddenly there are hours and hours of continuous black holes in my memory there, after getting those capsules. As I do remember everything else from this whole episode way, way too clearly for my liking, this is not easily to be explained. I remember the tiny moments I drifted to sleep and woke a few minutes later to some noise, then drifted off again, woke again when monitors beeped enthusiastically and someone came to my bed checking if my blood pressure sensors were working properly (yes, only it was my blood pressure not working properly). But after getting the “Duact” capsules I could suddenly drop for 6 hours. I could not feel the cannula was changed in the back of my hand – and as getting a cannula inside my veins is usually something considered worth treating oneself with a bar of chocolate and proper celebration and takes anything from one to eighteen attempt to achieve, I am still in awe how they had done it, without me knowing a thing.
It could have been the Duact side-effects in me, making me drowsy, except I wasn’t given any Duact. The effect could also and of course be explained with low natrium levels, nervous system not working, exhaustion, and so on. But then, it can’t; I had the same sleeping problems the whole 8 days stay at the hospital, day and night, excluding the two days I was given “Duact” capsules.
I later tried to find out what I had been given. Nobody can tell. I asked from the national Poison Information Centre, I asked from the University Pharmacy, I searched through the international web databases. Duact is a white capsule, with a Wellcome logo and the text Duact. Universally used, easily recognisable. You could not kind of confuse it with any other medicines. All the other pseudoephedrine products available in Finland are pills not capsules. And what I was given is, first a beige-ish white capsule with brown and red lines circling it, and then the next day, a capsule with another half beige and the other brown. So, absolutely no pseudoephedrine. And according to my scant case report, devoid of most of the information of my stay, I had been given Duact…
I had been given wrong medicine twice. One could have been a mistake, an accident happening when you are busy and tired, but twice… I do not believe in coincidences. I don’t know what they gave me. A horrible thought, giving the fact I was in hospital. I mean, the chief neurologist, he readily admitted I must have been given something else, but he could not tell me what.
You see, later I asked about it from the chief neurologist, during the most interesting reception I have ever been, and he admitted I could have been given anything: potilaalle voidaan antaa mitä vaan, milloin vaan, a direct translation of this would be: “patient can be given anything, anytime”. A hospital clinic’s chief admitting freely and easily that they can give patients anything, anytime. (Anything by mistake, I think, not as in they are powerful to give anything anytime they want.)
I am not sure if I am exaggerating a problem here that doesn’t even exist, but for me, that sentence is a scary one and I am not entirely sure this attitude or the fact, for that matter, is entirely proper or even legal. It’s like mixing archaeological strata of Middle Bronze Age and Iron Age in official excavation reports and then shrug and say, who cares, mistakes happen (just so you know, there are about 3000 years happened between those two eras), but much, much worse as wrong pills could be lethal.
After these events, how I am supposed to know what they gave me, when they give me three times that ¼ pill of ephedrine? That is, white crumbles of a pill with no possibility to recognise what it was? Oh, and with no mention whatsoever of me getting it, anywhere. In my case report there is a mention that ephedrine was ordered, and that doctors had a meeting deciding which would be a suitable dosage, and even that I was wondering if it was ephedrine making me feel dizzy, but there is no mention they actually gave the medicine to me. Anywhere. Not in the case report personnel kept and were supposed to write everything down, and definitely not in my official medical files. Medication left undocumented in hospital is a serious issue here in Finland, not to mention mistakes in it.
Mixed Messages.
Now, we need to take a little time travelling and go back to the phone call I had had in September 2017, with the neurologist responsible for my care in the neurological clinic of the central hospital. The phone call that set everything in motion.
The original reason for that phone call was to inform me that they had had a phone call from a specialist (a neurologist) from The Social Insurance Institution of Finland, KELA, who suggested that they should do more tests to make sure it was not only an ocular myasthenia (that is, myasthenia affecting only the eyes) I had, but myasthenia gravis (affecting the whole body). In ENMG tests in 2015, they had found myasthenia only in my eyes, but my first neurologist in the neurological clinic, the one who retired soon after, had said it is obvious that my myasthenia is not only in my eyes, but in my whole body, that all the symptoms matched. The same was said when I was in neurological rehab centre in 2016, where a team of professionals from different fields had tested and cared me (and again in 2018).
About symptoms… Can I just confess something here? I might be a researcher, I might know a lot of things, and there is this annoying habit of my brain catching strange terms and concepts and remembering them even if I cannot remember which year it is, we are living now, but I also know that sometimes it is best to leave some things for professionals. (Giving they know what they are doing, of course, which isn’t always the case.) That’s why I had decided long, long ago that I would not google my symptoms or diagnoses and what’s more, I do not try to make self-diagnosis of any kind, as usually that would end in one conclusion, and one conclusion only: the patient will die in a couple of hours.
Why to choose to be so ignorant, when there is so much information to offer? Because. I have a brain injury. My memory does not work properly, and for example the concept of time is a complete mystery to me. For some reason, my brain loves difficult words, like alpha-1-antitrypsine deficiency and memorises them without any difficulty, and what’s astonishing, without me knowing it, can pop them out in the right places. How cool, but I’d rather choose to remember what month it is, and if I took my afternoon medicines or not. So, I have thought it’d be quite a reasonable thing to do, not to read anything that would leave false imprints in my brain. That way I can be absolutely certain that when a medical professional asks about my symptoms, my brain cannot, unconscious to me, confuse anything I have read about symptoms or illnesses to what I have actually experienced in real life. This has resulted to some hilarious moments, when for example, in a rehab centre I revisited again two years later (2018), they really could not believe I had still not read anything about myasthenia gravis and actually made me read about it on the spot. But that was year after the episode in hospital, so symptoms I had explained having in, let’s say 2015, cannot be explained by anything I had read, and I had listed symptoms that both the neurologist at the clinic and rehab personnel had said would definitely mean myasthenia gravis.
Which brings us back to the phone call. The neurologist who called me, explained that this KELA specialist had said it seemed to him when he had read my papers (while deciding about my disability pension) that my symptoms would fit better to myasthenia gravis than to ocular myasthenia, and suggested the clinic running more tests to catch it. Later I learnt that it is quite very rare that a KELA specialist rings to clinic and suggest such things as these, and so said the neurologist on the phone to me, too. That they had not had such a phone call before. But, when KELA, The Social Insurance Institution of Finland, asks, thus will happen, as it is the instance who decides about social benefits in Finland. And so, it was decided and scheduled that I’d be having a new ENMG test in a month’s time and neuropsychological tests the next spring. And then I asked about rewriting my prescriptions on the phone…
I was in the neurological clinic of the central hospital in middle of October, 2017 and the ENMG was scheduled to be two weeks after. While I was there, it was rescheduled to happen during my stay. That’s why my myasthenia medication needed to be put on hold, too, for the tests. And because my myasthenia medication was on hold, they wanted to make a Tensilon test to me, a kind of quick test to see how your eyes react to myasthenia medication. In hindsight, it wasn’t a very clever thing to, to accept any myasthenia related tests made to me there, to mix completely different issues of my chronic illness treatment and the medication battle I was going through, but how I was to know they wanted to get rid of my diagnosis?
They made the Tensilon test to me and the chief neurologist interpreted the result as negative; that I had not reacted like a myasthenic would do and therefore I could not have had myasthenia gravis. Only, I most strongly disagree. There were several things affecting the Tensilon tests, about some of which I myself and also my husband pointed out immediately, some we realised only afterwards.
One. I was absolutely horridly dehydrated, and they had started a saline (sodium chloride) infusion a few moments ago. I had had regular saline infusions the past few years and my body had craved for both natrium and fluids after the infusions were, too, cut out a month ago, and now I was in the hospital, unable to eat and drink and the dehydration had gone worse. (If you remember, I told earlier that I had had lab tests right before going into hospital and my dehydration was not only severe, it was in dangerous level, even before my inability to eat and drink.) Sodium chloride was a familiar fluid to my body and as it had craved for some fluids, the effects were just the same they always had been, and have been afterwards, too, every time. It may sound incredulous, but it is true. With chronic need of natrium and fluids, my body absorbs the fluids like dry earth the long-waited rain, with immediate effects. It takes only a couple of minutes for my body to start feeling more relaxed, like it knew help is arriving, and the clarity starts to follow soon, but there are two things that always happens within minutes. First, for some reason, I can feel my whole body starts to kind of cool and refresh and it feels so good, especially in my legs that are one of those bits that hardly ever have enough blood circulating in down there. The feeling of blood circulating in my feet is a bliss. Second thing happening is my eyesight getting just a teeny tiny bit clearer as my brain seems to get clearer, too.
In my muddled, stressed, exhausted, battered, even abused state, I did not understand to say that no, wait! You cannot make any tests on me right now, when you have just put a drip on, it will confuse the results inevitably, as the results of the infusion have started to kick in and I feel just that extra bit better. But I didn’t understand and realise to say so. And they injected a nice amount of extra sodium chloride in my body as the part one of the test and asked me to try to rise my head as I was half-sitting, half-lying in bed. I did as I was told to and commented that I can feel my legs and it feels so good. And at that instant, my brain started to slowly work on something, I could feel it slowly, agonisingly slowly start to wheel, but there were those televisions on, several nurses and other people in the ward, making noises and movement and there was my husband standing by my one side and the chief doctor and a nurse on the other side and so much stimulation for my completely wrecked brain that I started to panic what it was that my whole body wanted to tell me. And as I have written earlier, I could do things, but only slowly, after getting messages through first, to my brain and then from there onwards, to my muscles, but it took time and it was also so much effort that I needed rest after just the tiniest effort. So, it was just plain catastrophic nightmare when they injected the second fluid (the medicine) in me right after the first one and said that the effects should come immediately and last only maximum to one minute. For me, it was way too quickly as my whole body was in pause mode after the effort just seconds ago, they should have waited a few moments for my brain to adjust to the next thing. And at that precise moment, at that vital moment when they had just injected the fluid, the automatically timed blood pressure measuring started, and it made my whole confused, exhausted body to get averted and to concentrate on the hard pressure on my other hand. I still strongly object to these two things: first, when they knew how incredibly weak I was and unable to move most of the time and they had seen how much effort it took every single time, why they did not wait for me to be ready for the next phase? To be able to breathe and rest and get my brain and body ready? And why did they continue it even if the blood pressure measuring happened in the same instant, disputing the whole test.
They asked me to lift my head again and move my legs. I could not lift a muscle. Suddenly my whole body paralysed. I felt a huge wave of burning inside me, like my whole body was in fire inside, and it hurt, oh how it hurt. I felt nauseate, so incredibly nauseate that I could not speak, and my heart went all wild. I could not see properly, I suddenly started to sweat, I felt dizzy and everything happened like behind a thick curtain in slow motion, and it was extremely difficult to breathe. My muscles felt like mush. At this point, when I did not react immediately, unable to speak, with so much in me happening suddenly, the chief neurologist said the test was over and ordered my husband to the corridor where he angrily and in no uncertain terms said that my husband should arrange some psychiatric help as that is clearly all I need. At that exact moment they were heading into the corridor, not even out of the room yet, maybe 2 minutes after the injection, I suddenly felt better. I did not know what was happening in the corridor, so I had no idea I had failed the test, but my vision cleared, and I could actually move my left hand which had been of no use for the past couple of days, and I could press the alarm button and call a nurse. I also got the message through in my brain that the familiar, good feeling I had had the first time, was familiar because it was the same feeling I had always had with sodium chlorine. I urgently explained all that to the nurse who went to get the doctor, but the chief neurologist had made his mind. I was a total nut and my ability to move was nothing to do with the test and it was late anyway, it was a minute over the so-called deadline.
Just a dose of Tensilon could not have made me feel decidedly stronger anyway, after the first effort of trying to move, as it was not only my myasthenic side having problems like they usually do when making a Tensilon test, but my whole, entire body not functioning. No amount of Tensilon would not have helped me to recover and instantly repeat action when my whole system was shut down.
There are some facts that I would like to point out now, even if they did not tell me these in the hospital, prior or after the Tensilon test. Facts that make me stick to my point of view very clearly; the test made in those circumstances and with those results was a ridiculous excuse of test misuse and misinterpretation that should not be regarded in consideration of making or removing any kind of diagnosis. Except, it was used as a proof that I don’t have myasthenia gravis.
Regardless the source, information about the Tensilon test includes these facts. First of all, the Tensilon test is not recommended to use, if you have a slow heart rate, asthma, an irregular heartbeat, low blood pressure, or obstructions in the urinary tract or intestines. I had all of those at the hospital, including catheterization because I was unable to pee. Interesting, actually, that they made the whole test anyway.
The normal procedure is that first you would be injected a small amount of Tensilon to see the side effects, and after that you would be observed for about two minutes for any side effects like slow breathing, slowed heart rate, and low blood pressure, before proceeding to inject the rest of the test dose.
So, if you haven’t reacted to the first part of the test dose, you’ll be given the rest of the dose, and only after that starts the actual test part; to repeatedly examine the muscle strength. It is said everywhere that the effect of Tensilon lasts for approximately 10 minutes. There is no mention of the test result lasting max. one minute or so. No. They say that the muscle tests can be repeated 3-4 times during the Tensilon test time, to make sure the results are correct. They say that it takes approx. ten (10) minutes for the results to show. Not one minute. Ten. Ten minutes is ten times more, ten times longer than one minute, just to make myself clear.
It is also said that for some types of myasthenia, Tensilon may make the weakness worse. It is also recommended and emphasised that the whole amount should not be injected all in once, but in smaller doses to prevent muscarinic side effects to appear. Remember how I wrote earlier how my body has problems with muscarinic side effects and that my medical treatment prevented those? (And that was also written in my papers I had given to the chief doctor.) Yes, we are talking about the exact subject here.
The side effects of the Tensilon test are listed as these: nausea, upset stomach, blurred vision, sweating, increased saliva production, dizziness or fainting, breathing difficulties, twitching or rapid, uncontrollable blinking, breathing failure or abnormal heart rhythms, and muscarinic cholinergic adverse effects. (Therefore, it is underlined in everywhere that there should be a dosing of atropine at hand, to immediately deal with cholinergic crisis if needed.)
I had listed all these symptoms to the chief neurologist, who shrugged them off, as according to him, he had just proved I had no myasthenia but only mental problems. I tried to object, my husband tried to object, but he stuck to it, afterwards, too, when he repeatedly said that the test proved I had not myasthenia gravis. Even if I had all the symptoms a myasthenic could get. Only, unfortunately I learnt all this only afterwards.
I dispute the whole test, based on all mentioned above. I tried to explain that I could, whit extreme concentration, lift my limbs during the first phase of the test, because I could do it all the time, when having rested and then concentrating, but what was the problem was when they asked me to repeat any physical effort too soon afterwards. I tried to point out that after the first side effects paralysing my whole body (and causing cholinergic crisis) the Tensilon injection did improve my eyesight and my muscle strength considerably, which could be seen for example in when I could move my left hand when I hadn’t been able to do that in a couple of days. And afterwards, when I had learnt that Tensilon test should be injected in several phases to avoid too severe side effects and that the results could be seen, in reality, ten times longer than I was repeatedly claimed they would last, after I learnt that in reality the side effects I had immediately reported were exactly those myasthenia gravis patients were told to have if having muscarinic cholinergic adverse effects, and after I learnt that indeed, some myasthenia gravis patients reacted to the Tensilon test just like I did, I cannot draw but one simple conclusion. The test cannot be valid, it was every inch a fraud. Why they lied to me and to my husband, tried to make us believe I had failed the test when I had, in fact, reacted just like a myasthenic patients do, if not for some ulterior motive.
Afterwards, I read from the notes my husband wrote that “the chief neurologist tried to convince me that my wife is a lunatic”. How low are they willing to descent in their desire to be right and superior? How low were they willing to go in their wish to destroy a patient? Very far, I was to find out.
To underline my point that the test results are highly questionable, a tiny curiosity: the whole Tensilon test was actually forbidden in the USA the next year, 2018.
Interpretations.
Oh, the tests… It didn’t stop at the interesting interpretation of the Tensilon test. They also made some reinterpretations on my ENMG tests made 2015 that show I had myasthenia and according to these reinterpretations I had no myasthenia at all, and to make sure the reinterpretations would not be questioned, the original results of 2015 suddenly vanished to thin air from my medical files. Yes, you read right the first time.
I am exceptionally interested in interpretations and reinterpretations, having spent couple of decades studying theology, so I really know what I am talking about. Interpretation should always be well-documented, well-articulated, and as solidly and explicitly proved as scientifically possible. And reinterpreting something needs not only an excellent reasoning to start doing it in the first place, but also double well-documenting, well-articulating, and proving. Otherwise, everyone could interpret everything they want in a way they want, whenever they want, and more frighteningly, whenever they do not like the original results. I was never explained, let alone justified why they took my earlier ENMG results and ripped them to pieces, and not only the original results, but any trace I had ever had one, were wiped out from my medical files. Which, may I just quickly add, is illegal.
You know ENMG test? The one they stick needles into you and poke and roll the needles inside your muscles to measure their function? Yes, that one. It is especially interesting, when they stick the needle right next to your eyeball, so I had feared this new test for a long time now. Except, I needn’t to as they did not do it half as thoroughly this time.
So, I was whisked off to the ENMG test from the neurological intensive care, and the test took half the time it had took 2015, when they found evidence of ocular myasthenia. It was well documented, and what was also documented was where those symptoms were found: in particular are of my face. Which, they did not test this time at all. Not even when I pointed it out, that here is where they found it the last time.
My husband attended me to the ENMG test and he agrees that it felt the specialist was clearly aware or conscious of something, he seemed a bit nervous, although very polite. He could not find anything. But then, he said, these tests are insufficient and do not always show results as they needed to find the exact spot in the patient’s body that the malfunction would be evident, that it could be pure accident that they find something and them not finding anything was not considered as a proof that something does not exist.
I have been thinking a lot afterwards, and actually not one single doctor has been able to answer to this: could it be possible that nothing was seen because my whole body was not functioning. I could not move myself during the test, I could not tighten my muscles as supposed to, during the test. There were clear symptoms and test results visible in 2015. I do not want to think that the test wasn’t done properly on purpose that the results would be falsified on purpose. I prefer thinking that either they did not hit the spot (which they obviously could not have done as the area in my face that had shown myasthenic activity in 2015 was left untouched now), or then my medical treatment had made it better. You see, that is one option several neurologists, myasthenia gravis specialist, and other doctors had said could be possible.
Based on these ENMG results (and pushing aside the previous ones), they then came to tell me that all I had was serious mental problems. And how they did it, is something I really do not wish any patient to experience. As all of the things happened hadn’t been enough, there was this last fanfare to come. It was, as if they wanted one more attempt to make sure I’d be so overwhelmingly crushed I could not recover it, I could neatly and kindly accept myself as a mental case, and that I’d never ever have the courage to speak about any of this anywhere. Well, it took long enough, but here I am. Ready for the last chapter.
End of Part Eight of Ten.
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