Long Update
Well, I guess it is time for a little update. I’m back from the hospital. They discharged me after two days with the following diagnosis: fatigue and weakness with diffuse neurological symptoms. As far as I am concerned, this does not really merit being called a diagnosis. This means nothing and everything.
I am now almost incapable of leaving my room. Walking down the hallway to the elevator leaves me feeling so weak that I have to consider returning to my room and lying down again. I am trapped here in my apartment. It has become my little universe. I lie on my bed all day, watching TV, sleeping, dozing, and thinking. I try to research on the internet. I try to figure out other possibilities, other diseases I might have. And yes, as painful as it is to admit this, the doctors are right. There seems to be no one disease that matches all of my symptoms. But there are many that match my symptoms in at least many parts. But then again my judgment is not relevant here, though I am beginning to regret now, that I did not study medicine. I should have. At least then I would feel less helpless now (or so I imagine.)
Anyway, let me start from the beginning:
On Monday morning I was already feeling really bad. My walk on Sunday afternoon had been a stupid idea. Sure, it was only a tiny, little walk, but it left me feeling so incredibly weak and fatigued that I spend the whole Monday morning lying on my bed feeling horrible. Everything was tingling badly again. My face was twitching and my throat felt like it was contracting again.
At first I just sat on my bed and tried to distract myself by watching TV. It didn’t work. Then, I tried lying down for a while. But lying down only makes the twitching and tingling worse. It somehow becomes even more noticeable when my muscles are relaxed. I then sat on the floor in front of my bed for a while, fingering the keys of my cell phone, trying to work up the courage to call some doctor and explain my situation. I knew the neurologist had told me to call him if I felt worse. I got out the card with his number on it. I sat holding it for a while. I couldn’t get myself to dial the number. I feel so pathetic, so stupid. I didn’t feel like I had the right to ask for help. After all, the neurologist had called my situation “nothing serious”. I decided not to call. Instead, I decided to go to class and try to distract myself. That was a very bad idea as I know now. It took me two days to fully recover from the walk to the university and the roughly one hour I spend sitting in class.
When I got to the class room I was already feeling terrible. I would have liked to turn around and go back home right there and then. I was so tired and weak. I sat in front of the classroom for a while contemplating. Then I decided to give it a shot. I went in and sat down. I chose the spot closest to the door because I was afraid that I might have to leave at some stage during the class because the symptoms would become unbearable.
The first 30 minutes of class were not too bad. Sitting down after the extremely strenuous walk to the College of Communication made me feel a bit better initially. As the class progressed however, I started feeling worse again. Initially my handwriting was still somewhat neat. After a few minutes of note taking notes however, it turned into an indecipherable mess of squiggles and disjointed lines. I simply couldn’t control my right hand and arm anymore. It twitched and shook and the more I wrote the worse it got.
Eventually, after 40 minutes or so, I stopped writing and listening to the lecture altogether. I couldn’t concentrate anymore and my head was feeling incredibly heavy again so that I needed to rest it on my left hand. I looked at the time: only 40 minutes into the lecture and I felt as though it had been hours. I contemplated getting up and simply walking out but was too embarrassed to do so. Instead, I simply sat, staring at the squiggles and abstract, wavy lines in front of me, hoping that it would be break time soon. Finally after 1 hour and 20 minutes we were allowed a short break.
I packed my things into my bag, put on my coat and told the professor I was going home. I remember that when I told her I was already shaking really badly. My voice was even trembling and vibrating weirdly when I spoke. I remember trying to do up my coat but being unable to do so because my hands were trembling so much. Especially my right arm and hand were twitching and jumping up and down. The professor was very understanding. She told me to go home and not worry about missing the class.
When I walked out of the classroom I tried to decide what to do. I thought about going home, but I was too scared. I was so scared of the weird twitching and tingling. I was terrified. Instead I decided to walk and think. I knew that that was a bad choice because walking always makes everything worse but at least while I am outside in the cold, fresh air, the symptoms appear less noticeable. So I walked. I didn’t know where to go though. I guess I was just kind of hoping I would fall over and die. Of course, I didn’t. Instead I walked and walked, stumbled and tripped, swayed and twitched.
People on the street started asking me if I was alright. This one homeless woman seemed very concerned about me. She followed me for a while, continuously asking me if I was alright. At some stage I tripped and nearly fell against a pole. I caught myself though by holding onto the pole to catch my fall. Two guys driving by in a car honked their horn and laughed at me. I guess it would have been funny if this was a one time fluke accident. But this happens to me all the time. Still, I clung to the pole and smiled back.
Then I walked into the pharmacy. I didn’t know where to go or what to do. I knew that as soon as I would lie down or would try to rest I would start twitching and convulsing really badly again, my throat would feel like it was choking me again and I would feel incapable of breathing. In the pharmacy it was very warm. Too warm for me. I immediately started feeling much worse again. I stumbled around, nearly feel into a stack of bottles that had been piled up in a corned of the shop. Eventually, I grabbed hold of a random packet of sweets, staggered towards the counter and, with trembling hands, tried to pull some money out of my wallet.
Then I went back outside. I crossed the street and nearly fell again while doing so. The Student Health Centre is conveniently located right across from the pharmacy. I stood in front of those familiar sliding doors for a long time. I didn’t know whether to go in or not. I didn’t know what else to do though. So I gathered up some courage and walked inside.
Break - I need a break from writing. It is soo exhausting. My hands are trembling really badly again.
Later - Okay. I now feel as tough I have more or less recovered.
Anyway, so I waked inside. My hand was shaking so much as I attempted to put my name and student ID number onto the sign in sheet at the front desk. Then I sat in one of the chairs. I rested my head on my left hand and watched my right arm twitch. The other students who were waiting looked at me weirdly. I felt like such a nutcase.
After a few minutes I got to talk to a nurse, again. She was nice, took my blood pressure, pulse and my temperature. As expected, all of this was normal. She asked me what was wrong. I didn’t know what to say. After a few seconds of awkward silence, I told her that I didn’t know what was wrong, that I just needed someone to do something, and that I didn’t know what to do anymore. She flicked through my chart. I felt a though she was about to send me away again. Eventually she told me that she didn’t want to let me go without me seeing Dr. McBride first.
So I sat and waited for a few more minutes. Then I got to talk to Dr. McBride, again. I felt a bit sorry for him. He seemed so perplexed and helpless that I almost felt as though I was the one who should now suggest some course of action. I told him that I didn’t expect him to do anything much, and that I just didn’t know what to do anymore and that I was very, very scared. And all the while I was talking to him my body was convulsing, my hand and arm were bouncing about weirdly and my voice was vibrating strangely.
Dr. McBride decided to consult with the neurologist about what to do with me. He tried calling Dr. Tyler but he on his way home and couldn’t be reached. In the end, Dr. McBride decided to send me away and have me take some of the Klonopin when I got home. I stumbled out of the Student Health Centre, swayed over to the T stop and stood waiting, clenching my right hand with my left one so that it wouldn’t shake as noticeably.
When I got home I discovered that I had none of the Klonopin left. So I tried to distract myself from the convulsions and went and talked to my boyfriend over the internet for about 30 minutes. I showed him my twitching hand via the webcam and told him about yet another one of my doctor visits. He seemed very concerned. After 30 minutes I started feeling incredibly weak again, so I told him I needed to lie down. I stumbled over to my bed and buried myself in the sheets. I was twitching and tingling terribly again. My whole body was twitching. It was terrible.
Then Dr. McBride called. He said that he had talked to Dr. Tyler and that they had decided to admit me to hospital. I was a bit perplexed. I hadn’t expected this. I wasn’t even sure if I wanted to go to hospital. But I consented, hoping that they would be able to carry out the tests necessary to resolve the mystery of my illness.
I decided that it would be best to go to the hospital first thing next morning. When I put down the phone I immediately knew that that had been a bad decision. I was feeling almost as terrible again as the night that I had decided to go to the ER. My whole body was tingling, my thinking was distorted, I couldn’t concentrate, not even on watching TV, my throat felt like it was contracting again and my whole body was twitching. I could feel the individual muscles spasm. They look like little worms when they contact and squirm underneath my skin. I lay on my bed and was terrified. I thought about calling Dr. McBride and telling him that I had changed my mind, that I would rather go to the hospital right away. But I couldn’t convince myself to call him. I felt so pathetic.
Instead I lay on my bed, feeling like shit. At around 7:30 pm I fell asleep. I woke up again at 11 am and watched TV for an hour. I was still twitching and still didn’t feel like I could breathe right. At about midnight I fell asleep again but woke up soon after at 2:20 am. After that, I wasn’t able to go back to bed. I felt terrible. My throat was spasming again and my neck felt so weak that it was hard for me to hold up my head.
I got up and started pacing up and down my room. That sometimes helps. I walked and walked. My legs got weaker and weaker but at least the tingling and twitching wasn’t as noticeable. It didn’t work all that well though. I still felt like I couldn’t swallow or breathe. I stood in front of the mirror for a few minutes looking at my throat. I could see the muscles twitch and contract on the right side.
I then got out my hot water bottle and filled it up. I started pressing it against my throat, against my lungs and my neck. It helped. The spasming got less, though I still felt as though I couldn’t breathe. I continued pacing up and down. It was 4 am when I temporarily started feeling better. I sat down and wrote a few emails. I wrote to my parents, and informed the head student services of my impeding visit to the hospital.
After having written those mails I started feeling worse again. I took a shower. That didn’t help much either. Then I went and opened the window. I spent the next four hours sitting in front of the opened window, holding my face to the fly screen so as to benefit as much from the cold autumn air as possible. And all the while I was pressing the hot water bottle to my throat and neck to stop the spasming.
At about 10 am Dr. McBride send me an SMS, informing me that he was still looking for a bed for me in the hospital. Shortly afterwards he gave me a call, said that he had found a bed and that he was sending a cab to take me there. Unfortunately, the cab driver didn’t quite know where to go and neither did I. He not only drove like a mad man, but also failed to find the main entrance of the hospital. Also, his car was so well cushioned that I felt nauseated all throughout the ride. Eventually he dropped me off in front of a very inconspicuous building and explained to me that this was the main entrance. I looked at the building. It seemed nothing like the main entrance to a large hospital, but what was I to do? Question the cab driver? So I paid and got out of the cab. I dragged myself towards the supposed main entrance. When I got to the door the sign next to it read: Executive Office.
I looked around. There was nothing that looked like a main entrance anywhere in sight. There weren’t any signs to go by either. So I waddled over to a bench and sat. I felt so weak again that I hardly knew how to go on. After a few minutes I regained some of my strength. I convinced myself to get up and walk along the street towards a building with the inscription “Boston University School of Medicine”. In front of the building I discovered a sign showing a map of the hospital grounds. Unfortunately, I could not stand in front of the sign long enough to make out a main entrance. I was simply too weak. I had to sit down on a nearby bench again. Then I decided to go left towards a building that had a lot of cabs parked in front of it and a few people in wheelchairs sitting outside, smoking cigarettes. When I finally reached the building I could hardly go on. I prayed that this was the right building. I stumbled towards the doors and read the sign: Main entrance. I was so incredibly relieved.
I walked inside and immediately saw the admittance desk. To my great dismay I noticed that there were no free chairs anywhere around and that during the whole process of taking down my information I would have to stand at the desk. I clung to the desk and tried to recall my information. Name, date of birth, address, phone number etc. At times the urge to sit down got so unbearable that I contemplated just dropping to the floor right there and then. The man taking down my information could tell I was distressed so he hurried up a bit. Then he ushered me to a nearby bench and helped me sit down. I felt awful. I placed my head onto my knees and waited for my world to stop spinning. I just hoped I would die. I felt so bad. Eventually the man from the admittance desk retuned. He was very nice to me. He placed the hospital identification tag on my shaking right wrist and guided me towards the elevator. He then explained to me how to get to my room and gave me my documents to take with me.
I swayed toward the elevator. It was very crowded. I had to go to the eight floor. I think I stopped five times on my way there. The motion of the elevator made me feel sick. Every time it stopped I felt my legs give out, trying to compensate for the sudden stopping motion. Eventually I reached the eight floor, found my ward and handed my papers to the nurse at the desk. She told me to go into my room. I did.
There I lay on my bed, not knowing what to do with myself. I was shaking again. My unexpected walk had been much too exhausting for me. My hands were twitching and the muscles in my legs were convulsing weirdly. I felt like such a fool. I lay there for about an hour. Eventually my nurse came in to check if I wasn’t dying (or so she told me.) She was relieved to find me young, capable of walking, and half ways healthy. She took my vital signs and started noting down a few things about my health. Then she left again.
Eventually a doctor came. I got to tell her my story. Then another doctor came. I got to tell her my story, too. They both examined me briefly and did all those now familiar neurological tests. They were both very nice to me and made me feel hopeful about finding a diagnosis to match my symptoms. They said they don’t usually discharge people without finding out what is wrong with them. I felt very optimistic.
Later that day a neurologist came to see me. He totally freaked me out. He was young, maybe in his thirties, but seemed very grim, serious and unapproachable. His left eye drooped weirdly and he interrogated me as though I was a criminal on trial. I felt very intimidated. He repeatedly told me to stop doing ‘that’ with my hand. I tried to. I relaxed my hand but every time I did so other parts of my body would start twitching. He seemed to think that I was faking it. I was not.
He also repeatedly pointed out supposed flaws in my story. Sometimes I was unable to remember which symptom came first and which day I had first experienced the symptom on. I tried to explain to him that I didn’t remember things that clearly and precisely, that it seemed more like a gradual progression to me and that some days were worse than others. He didn’t seem to care. He told me, in his strange East European accent: “What you are telling me doesn’t make any sense.” He seemed very hostile and I was a little scared of him. Nonetheless, I tried o tell him my story as best as I could.
After having interrogated me for some time he started examining me. He did the good old ‘follow my finger with your eyes” test, had me look up and down, left and right, looked into my eyes, and examined my arms and legs. He couldn’t find much wrong with them. Then he told me that he doesn’t think I have MS. Well, at least that was a solid statement for once. He also told me that he was not sure if my symptoms had an organic cause. He said that if I wanted the lumbar puncture they would do it, but he didn’t think it necessary. He then proceeded to described it as such an unpleasant procedure that I decide to not have it done. I got quite upset about his statements though. When he left, I thought about discharging myself right there and then. I was so angry. I didn’t touch my food that evening. I just sat, staring out of the window, trying to understand what was wrong with me.
That evening I had about one litre of blood removed from my body. The nurse kept on coming back with more little tubes. Eventually, on the second day, they had taken so much blood that my left arm looked much like that of a drug addict with all the needle marks on it.
I didn’t sleep much that night. The lady in the bed next to me was very ill. She wasn’t able to get out of bed and kept on chocking every 30 minutes or so. She also seemed very fond of the little ‘call my nurse’ button. She pressed is about three times every hour, asking for water, pain killers or just for someone to help her move in her bed. She also had these couching fits which left me seriously worried that she might actually choke to death. Her condition made my problems seem very insignificant and trivial. I didn’t really feel like I belonged into a hospital. Or maybe I simply happened to have come to the wrong ward, the one with all the dying patients. I remember hearing some nurse talk about transplant patients and, at various times throughout the night, alarms would go off and people would start rushing to someone’s room.
I think I only got three hours of sleep all in all. Whenever I did manage to fall asleep I would be woken up by the nurse coming in to either tend to the woman in the bed next to me, or to take my vital signs and temperature. She always came and woke me up just when I had managed to fall asleep. At 5:30 the first doctor arrived to talk to the choking woman next to me. He switched on all the lights in our room and started examining her. From that point on I just lay in my bed staring at the ceiling, wishing to be back at home in my room.
At around 8 am the nurse returned to draw more of my blood. Then, at 10 am, I was visited by three psychiatrists. They all stood around my bed and listened to my story, asked me questions and wanted to know details about my self-injury and past depression. I felt very awkward sitting there in my bed in my pyjamas, having to tell my story to three total strangers who all stared at me and tried to find some incidence of craziness in my words or actions. And all the while the woman in the bed next to me was chocking and coughing.
The psychiatrists intimidated me less than the neurologist though and they didn’t really seem to think that there was anything much wrong with me. They concluded that I am not depressed. I knew that. They also concluded that the whole situation was very stressful for me: not knowing what is wrong with me, being in a new county and being scared about the symptoms. They told me to stop taking the Celexa and put me on Provigil instead in order to increase my energy level. They also told me to start seeing someone at the Behavioural Medicine Centre at BU to help me through this stressful time. Then they left.
I had kind of hoped they would find something obviously wrong with me. I had hoped that my symptoms might be consistent with some form of mental disorder or that they might conclude that I am a hypochondriac or something (though being labelled as such would surely not have been very pleasant either.) They found nothing of the kind though. But they did note in my discharge summary, that my symptoms might also be a combination of organic and psychological factors. Well, that doesn’t really mean much. That doesn’t mean anything at all.
Later, I was taken to have an echocardiogram done. I guess they wanted to figure out the cause of my heart murmur. I got picked up and was told to sit in a wheelchair. When I explained that I thought I was capable of walking I was told that it was against the law for patients to walk places by themselves. So I sat in the wheelchair and had them wheel me around. I felt ridiculous, but then again, I was in a hospital so it wasn’t quite that unusual. The echo wasn’t bad at all. I just had to lie there and let the nurse slide the ultrasound machine around on my chest. Eventually they confirmed my heart murmur but found it to be of little significance. In essence my heart is normal and healthy.
Later that day a 4th year medical student specialising in neurology came to see me. I guess I was a good object to practice on. I don’t know how many medical students came to see me during those two days, but it was sure quite a few and they all repeated the same tests and asked the questions the doctors had just done. I let them practice. The neurology student was very nice, not like the neurologist the day before. I clicked with him immediately. I told him my story again, had him examine me and do all those nice little neurological test again. He spend a lot of time talking to me and was very interested in my medical history. He also said that my symptoms are not characteristic of MS.
Later that day my doctor came to talk to me again. She said that all the blood tests hadn’t shown anything unusual. That the echo had been normal and showed nothing of concern and that the neurologists would be back later to take another look at me. She also said that they thought it would be best if I went home in the afternoon because all of the other tests could be done as an outpatient a well. I was glad to be able to go home. I too felt like I didn’t belong in a hospital with all the dying, seriously ill patients. The doctor was really nice. She said that everyone really wanted to help me, but that more tests would be needed and that those tests took time and should best be done as an outpatient.
At around 2 am a group of about twelve people in white coats came into my room and gathered around my bed. I felt very awkward. Then, a lady stepped forth and introduced herself as Dr. Wiesman, Assistant Professor of Neurology at the BU Medical School. She wanted to take another look at me. She did the ‘follow my finger’ exam again, tested my reflexes once more and then had me walk. I still couldn’t do the heel to toe thing but pointed out that I wasn’t sure whether I had been able to do that to being with. I also pointed out that the skin around my right knee was numb. She examined it but didn’t seem to attach much importance to it. Neither did I, on that matter (though the skin is still numb as I type now.)
Eventually one of the medical students came in and informed me that they would discharge me in the afternoon and that any further tests that were necessary should be continued as an outpatient. She said for me to follow up with Dr. McBride and see Dr. Reiskin, the psychiatrist at the Student Health Centre. She also said that I should give Dr. Tyler a call and arrange to see him again because they all felt it was best if I saw just one person who would supervise all the testing. At around 4 pm I signed my discharge form and was free to go.
I swayed down the hallway towards the elevator. When I got downstairs I called myself a cab. I stood outside waiting for a while. That was already too exhausting for me. I felt so tired and weak that I had to sit down on one of the barrels that had been placed in front of the hospital as ash trays. Yes, I was desperate enough to go sit on an ashtray while wearing my white coat. Eventually, after 10 minutes which seemed like a lifetime to me, the cab arrived and took me home.
When I got home, I had trouble opening the door to my building because it requires sliding my ID card through a card reader. After three failed attempts due to incontrollable shaking I succeed. I stumbled into the elevator and waddled towards my room. I was very much out of breath when I arrived and had to lie on my bed immediately to recover. There I lay, feeling miserable again, thinking how pointless this whole hospital stay had been. I also needed to go to the pharmacy to have my prescription filled but felt incapable of leaving the house. I was too tired and weak. Instead, I had a bath. I sat in the tub, warm water enveloping my body, trying to wash away all the hospital germs. Then I quickly called my parents to keep them updated and afterwards fell into bed and slept.
Thus ends my account. I am still no further than I was on Monday. I still do not know what is wrong with my, and maybe I never will. I have always hoped that I would get better soon. Now, as that hope is beginning to fade, I am forced to make that final sacrifice: I will have to sacrifice my studies for my health. I always wanted this. I still want this but I am physically incapable of leaving my room. I will withdraw from university on Monday.
So here ends my future and maybe, here starts another one.
I now have to rethink my life.
I am now almost incapable of leaving my room. Walking down the hallway to the elevator leaves me feeling so weak that I have to consider returning to my room and lying down again. I am trapped here in my apartment. It has become my little universe. I lie on my bed all day, watching TV, sleeping, dozing, and thinking. I try to research on the internet. I try to figure out other possibilities, other diseases I might have. And yes, as painful as it is to admit this, the doctors are right. There seems to be no one disease that matches all of my symptoms. But there are many that match my symptoms in at least many parts. But then again my judgment is not relevant here, though I am beginning to regret now, that I did not study medicine. I should have. At least then I would feel less helpless now (or so I imagine.)
Anyway, let me start from the beginning:
On Monday morning I was already feeling really bad. My walk on Sunday afternoon had been a stupid idea. Sure, it was only a tiny, little walk, but it left me feeling so incredibly weak and fatigued that I spend the whole Monday morning lying on my bed feeling horrible. Everything was tingling badly again. My face was twitching and my throat felt like it was contracting again.
At first I just sat on my bed and tried to distract myself by watching TV. It didn’t work. Then, I tried lying down for a while. But lying down only makes the twitching and tingling worse. It somehow becomes even more noticeable when my muscles are relaxed. I then sat on the floor in front of my bed for a while, fingering the keys of my cell phone, trying to work up the courage to call some doctor and explain my situation. I knew the neurologist had told me to call him if I felt worse. I got out the card with his number on it. I sat holding it for a while. I couldn’t get myself to dial the number. I feel so pathetic, so stupid. I didn’t feel like I had the right to ask for help. After all, the neurologist had called my situation “nothing serious”. I decided not to call. Instead, I decided to go to class and try to distract myself. That was a very bad idea as I know now. It took me two days to fully recover from the walk to the university and the roughly one hour I spend sitting in class.
When I got to the class room I was already feeling terrible. I would have liked to turn around and go back home right there and then. I was so tired and weak. I sat in front of the classroom for a while contemplating. Then I decided to give it a shot. I went in and sat down. I chose the spot closest to the door because I was afraid that I might have to leave at some stage during the class because the symptoms would become unbearable.
The first 30 minutes of class were not too bad. Sitting down after the extremely strenuous walk to the College of Communication made me feel a bit better initially. As the class progressed however, I started feeling worse again. Initially my handwriting was still somewhat neat. After a few minutes of note taking notes however, it turned into an indecipherable mess of squiggles and disjointed lines. I simply couldn’t control my right hand and arm anymore. It twitched and shook and the more I wrote the worse it got.
Eventually, after 40 minutes or so, I stopped writing and listening to the lecture altogether. I couldn’t concentrate anymore and my head was feeling incredibly heavy again so that I needed to rest it on my left hand. I looked at the time: only 40 minutes into the lecture and I felt as though it had been hours. I contemplated getting up and simply walking out but was too embarrassed to do so. Instead, I simply sat, staring at the squiggles and abstract, wavy lines in front of me, hoping that it would be break time soon. Finally after 1 hour and 20 minutes we were allowed a short break.
I packed my things into my bag, put on my coat and told the professor I was going home. I remember that when I told her I was already shaking really badly. My voice was even trembling and vibrating weirdly when I spoke. I remember trying to do up my coat but being unable to do so because my hands were trembling so much. Especially my right arm and hand were twitching and jumping up and down. The professor was very understanding. She told me to go home and not worry about missing the class.
When I walked out of the classroom I tried to decide what to do. I thought about going home, but I was too scared. I was so scared of the weird twitching and tingling. I was terrified. Instead I decided to walk and think. I knew that that was a bad choice because walking always makes everything worse but at least while I am outside in the cold, fresh air, the symptoms appear less noticeable. So I walked. I didn’t know where to go though. I guess I was just kind of hoping I would fall over and die. Of course, I didn’t. Instead I walked and walked, stumbled and tripped, swayed and twitched.
People on the street started asking me if I was alright. This one homeless woman seemed very concerned about me. She followed me for a while, continuously asking me if I was alright. At some stage I tripped and nearly fell against a pole. I caught myself though by holding onto the pole to catch my fall. Two guys driving by in a car honked their horn and laughed at me. I guess it would have been funny if this was a one time fluke accident. But this happens to me all the time. Still, I clung to the pole and smiled back.
Then I walked into the pharmacy. I didn’t know where to go or what to do. I knew that as soon as I would lie down or would try to rest I would start twitching and convulsing really badly again, my throat would feel like it was choking me again and I would feel incapable of breathing. In the pharmacy it was very warm. Too warm for me. I immediately started feeling much worse again. I stumbled around, nearly feel into a stack of bottles that had been piled up in a corned of the shop. Eventually, I grabbed hold of a random packet of sweets, staggered towards the counter and, with trembling hands, tried to pull some money out of my wallet.
Then I went back outside. I crossed the street and nearly fell again while doing so. The Student Health Centre is conveniently located right across from the pharmacy. I stood in front of those familiar sliding doors for a long time. I didn’t know whether to go in or not. I didn’t know what else to do though. So I gathered up some courage and walked inside.
Break - I need a break from writing. It is soo exhausting. My hands are trembling really badly again.
Later - Okay. I now feel as tough I have more or less recovered.
Anyway, so I waked inside. My hand was shaking so much as I attempted to put my name and student ID number onto the sign in sheet at the front desk. Then I sat in one of the chairs. I rested my head on my left hand and watched my right arm twitch. The other students who were waiting looked at me weirdly. I felt like such a nutcase.
After a few minutes I got to talk to a nurse, again. She was nice, took my blood pressure, pulse and my temperature. As expected, all of this was normal. She asked me what was wrong. I didn’t know what to say. After a few seconds of awkward silence, I told her that I didn’t know what was wrong, that I just needed someone to do something, and that I didn’t know what to do anymore. She flicked through my chart. I felt a though she was about to send me away again. Eventually she told me that she didn’t want to let me go without me seeing Dr. McBride first.
So I sat and waited for a few more minutes. Then I got to talk to Dr. McBride, again. I felt a bit sorry for him. He seemed so perplexed and helpless that I almost felt as though I was the one who should now suggest some course of action. I told him that I didn’t expect him to do anything much, and that I just didn’t know what to do anymore and that I was very, very scared. And all the while I was talking to him my body was convulsing, my hand and arm were bouncing about weirdly and my voice was vibrating strangely.
Dr. McBride decided to consult with the neurologist about what to do with me. He tried calling Dr. Tyler but he on his way home and couldn’t be reached. In the end, Dr. McBride decided to send me away and have me take some of the Klonopin when I got home. I stumbled out of the Student Health Centre, swayed over to the T stop and stood waiting, clenching my right hand with my left one so that it wouldn’t shake as noticeably.
When I got home I discovered that I had none of the Klonopin left. So I tried to distract myself from the convulsions and went and talked to my boyfriend over the internet for about 30 minutes. I showed him my twitching hand via the webcam and told him about yet another one of my doctor visits. He seemed very concerned. After 30 minutes I started feeling incredibly weak again, so I told him I needed to lie down. I stumbled over to my bed and buried myself in the sheets. I was twitching and tingling terribly again. My whole body was twitching. It was terrible.
Then Dr. McBride called. He said that he had talked to Dr. Tyler and that they had decided to admit me to hospital. I was a bit perplexed. I hadn’t expected this. I wasn’t even sure if I wanted to go to hospital. But I consented, hoping that they would be able to carry out the tests necessary to resolve the mystery of my illness.
I decided that it would be best to go to the hospital first thing next morning. When I put down the phone I immediately knew that that had been a bad decision. I was feeling almost as terrible again as the night that I had decided to go to the ER. My whole body was tingling, my thinking was distorted, I couldn’t concentrate, not even on watching TV, my throat felt like it was contracting again and my whole body was twitching. I could feel the individual muscles spasm. They look like little worms when they contact and squirm underneath my skin. I lay on my bed and was terrified. I thought about calling Dr. McBride and telling him that I had changed my mind, that I would rather go to the hospital right away. But I couldn’t convince myself to call him. I felt so pathetic.
Instead I lay on my bed, feeling like shit. At around 7:30 pm I fell asleep. I woke up again at 11 am and watched TV for an hour. I was still twitching and still didn’t feel like I could breathe right. At about midnight I fell asleep again but woke up soon after at 2:20 am. After that, I wasn’t able to go back to bed. I felt terrible. My throat was spasming again and my neck felt so weak that it was hard for me to hold up my head.
I got up and started pacing up and down my room. That sometimes helps. I walked and walked. My legs got weaker and weaker but at least the tingling and twitching wasn’t as noticeable. It didn’t work all that well though. I still felt like I couldn’t swallow or breathe. I stood in front of the mirror for a few minutes looking at my throat. I could see the muscles twitch and contract on the right side.
I then got out my hot water bottle and filled it up. I started pressing it against my throat, against my lungs and my neck. It helped. The spasming got less, though I still felt as though I couldn’t breathe. I continued pacing up and down. It was 4 am when I temporarily started feeling better. I sat down and wrote a few emails. I wrote to my parents, and informed the head student services of my impeding visit to the hospital.
After having written those mails I started feeling worse again. I took a shower. That didn’t help much either. Then I went and opened the window. I spent the next four hours sitting in front of the opened window, holding my face to the fly screen so as to benefit as much from the cold autumn air as possible. And all the while I was pressing the hot water bottle to my throat and neck to stop the spasming.
At about 10 am Dr. McBride send me an SMS, informing me that he was still looking for a bed for me in the hospital. Shortly afterwards he gave me a call, said that he had found a bed and that he was sending a cab to take me there. Unfortunately, the cab driver didn’t quite know where to go and neither did I. He not only drove like a mad man, but also failed to find the main entrance of the hospital. Also, his car was so well cushioned that I felt nauseated all throughout the ride. Eventually he dropped me off in front of a very inconspicuous building and explained to me that this was the main entrance. I looked at the building. It seemed nothing like the main entrance to a large hospital, but what was I to do? Question the cab driver? So I paid and got out of the cab. I dragged myself towards the supposed main entrance. When I got to the door the sign next to it read: Executive Office.
I looked around. There was nothing that looked like a main entrance anywhere in sight. There weren’t any signs to go by either. So I waddled over to a bench and sat. I felt so weak again that I hardly knew how to go on. After a few minutes I regained some of my strength. I convinced myself to get up and walk along the street towards a building with the inscription “Boston University School of Medicine”. In front of the building I discovered a sign showing a map of the hospital grounds. Unfortunately, I could not stand in front of the sign long enough to make out a main entrance. I was simply too weak. I had to sit down on a nearby bench again. Then I decided to go left towards a building that had a lot of cabs parked in front of it and a few people in wheelchairs sitting outside, smoking cigarettes. When I finally reached the building I could hardly go on. I prayed that this was the right building. I stumbled towards the doors and read the sign: Main entrance. I was so incredibly relieved.
I walked inside and immediately saw the admittance desk. To my great dismay I noticed that there were no free chairs anywhere around and that during the whole process of taking down my information I would have to stand at the desk. I clung to the desk and tried to recall my information. Name, date of birth, address, phone number etc. At times the urge to sit down got so unbearable that I contemplated just dropping to the floor right there and then. The man taking down my information could tell I was distressed so he hurried up a bit. Then he ushered me to a nearby bench and helped me sit down. I felt awful. I placed my head onto my knees and waited for my world to stop spinning. I just hoped I would die. I felt so bad. Eventually the man from the admittance desk retuned. He was very nice to me. He placed the hospital identification tag on my shaking right wrist and guided me towards the elevator. He then explained to me how to get to my room and gave me my documents to take with me.
I swayed toward the elevator. It was very crowded. I had to go to the eight floor. I think I stopped five times on my way there. The motion of the elevator made me feel sick. Every time it stopped I felt my legs give out, trying to compensate for the sudden stopping motion. Eventually I reached the eight floor, found my ward and handed my papers to the nurse at the desk. She told me to go into my room. I did.
There I lay on my bed, not knowing what to do with myself. I was shaking again. My unexpected walk had been much too exhausting for me. My hands were twitching and the muscles in my legs were convulsing weirdly. I felt like such a fool. I lay there for about an hour. Eventually my nurse came in to check if I wasn’t dying (or so she told me.) She was relieved to find me young, capable of walking, and half ways healthy. She took my vital signs and started noting down a few things about my health. Then she left again.
Eventually a doctor came. I got to tell her my story. Then another doctor came. I got to tell her my story, too. They both examined me briefly and did all those now familiar neurological tests. They were both very nice to me and made me feel hopeful about finding a diagnosis to match my symptoms. They said they don’t usually discharge people without finding out what is wrong with them. I felt very optimistic.
Later that day a neurologist came to see me. He totally freaked me out. He was young, maybe in his thirties, but seemed very grim, serious and unapproachable. His left eye drooped weirdly and he interrogated me as though I was a criminal on trial. I felt very intimidated. He repeatedly told me to stop doing ‘that’ with my hand. I tried to. I relaxed my hand but every time I did so other parts of my body would start twitching. He seemed to think that I was faking it. I was not.
He also repeatedly pointed out supposed flaws in my story. Sometimes I was unable to remember which symptom came first and which day I had first experienced the symptom on. I tried to explain to him that I didn’t remember things that clearly and precisely, that it seemed more like a gradual progression to me and that some days were worse than others. He didn’t seem to care. He told me, in his strange East European accent: “What you are telling me doesn’t make any sense.” He seemed very hostile and I was a little scared of him. Nonetheless, I tried o tell him my story as best as I could.
After having interrogated me for some time he started examining me. He did the good old ‘follow my finger with your eyes” test, had me look up and down, left and right, looked into my eyes, and examined my arms and legs. He couldn’t find much wrong with them. Then he told me that he doesn’t think I have MS. Well, at least that was a solid statement for once. He also told me that he was not sure if my symptoms had an organic cause. He said that if I wanted the lumbar puncture they would do it, but he didn’t think it necessary. He then proceeded to described it as such an unpleasant procedure that I decide to not have it done. I got quite upset about his statements though. When he left, I thought about discharging myself right there and then. I was so angry. I didn’t touch my food that evening. I just sat, staring out of the window, trying to understand what was wrong with me.
That evening I had about one litre of blood removed from my body. The nurse kept on coming back with more little tubes. Eventually, on the second day, they had taken so much blood that my left arm looked much like that of a drug addict with all the needle marks on it.
I didn’t sleep much that night. The lady in the bed next to me was very ill. She wasn’t able to get out of bed and kept on chocking every 30 minutes or so. She also seemed very fond of the little ‘call my nurse’ button. She pressed is about three times every hour, asking for water, pain killers or just for someone to help her move in her bed. She also had these couching fits which left me seriously worried that she might actually choke to death. Her condition made my problems seem very insignificant and trivial. I didn’t really feel like I belonged into a hospital. Or maybe I simply happened to have come to the wrong ward, the one with all the dying patients. I remember hearing some nurse talk about transplant patients and, at various times throughout the night, alarms would go off and people would start rushing to someone’s room.
I think I only got three hours of sleep all in all. Whenever I did manage to fall asleep I would be woken up by the nurse coming in to either tend to the woman in the bed next to me, or to take my vital signs and temperature. She always came and woke me up just when I had managed to fall asleep. At 5:30 the first doctor arrived to talk to the choking woman next to me. He switched on all the lights in our room and started examining her. From that point on I just lay in my bed staring at the ceiling, wishing to be back at home in my room.
At around 8 am the nurse returned to draw more of my blood. Then, at 10 am, I was visited by three psychiatrists. They all stood around my bed and listened to my story, asked me questions and wanted to know details about my self-injury and past depression. I felt very awkward sitting there in my bed in my pyjamas, having to tell my story to three total strangers who all stared at me and tried to find some incidence of craziness in my words or actions. And all the while the woman in the bed next to me was chocking and coughing.
The psychiatrists intimidated me less than the neurologist though and they didn’t really seem to think that there was anything much wrong with me. They concluded that I am not depressed. I knew that. They also concluded that the whole situation was very stressful for me: not knowing what is wrong with me, being in a new county and being scared about the symptoms. They told me to stop taking the Celexa and put me on Provigil instead in order to increase my energy level. They also told me to start seeing someone at the Behavioural Medicine Centre at BU to help me through this stressful time. Then they left.
I had kind of hoped they would find something obviously wrong with me. I had hoped that my symptoms might be consistent with some form of mental disorder or that they might conclude that I am a hypochondriac or something (though being labelled as such would surely not have been very pleasant either.) They found nothing of the kind though. But they did note in my discharge summary, that my symptoms might also be a combination of organic and psychological factors. Well, that doesn’t really mean much. That doesn’t mean anything at all.
Later, I was taken to have an echocardiogram done. I guess they wanted to figure out the cause of my heart murmur. I got picked up and was told to sit in a wheelchair. When I explained that I thought I was capable of walking I was told that it was against the law for patients to walk places by themselves. So I sat in the wheelchair and had them wheel me around. I felt ridiculous, but then again, I was in a hospital so it wasn’t quite that unusual. The echo wasn’t bad at all. I just had to lie there and let the nurse slide the ultrasound machine around on my chest. Eventually they confirmed my heart murmur but found it to be of little significance. In essence my heart is normal and healthy.
Later that day a 4th year medical student specialising in neurology came to see me. I guess I was a good object to practice on. I don’t know how many medical students came to see me during those two days, but it was sure quite a few and they all repeated the same tests and asked the questions the doctors had just done. I let them practice. The neurology student was very nice, not like the neurologist the day before. I clicked with him immediately. I told him my story again, had him examine me and do all those nice little neurological test again. He spend a lot of time talking to me and was very interested in my medical history. He also said that my symptoms are not characteristic of MS.
Later that day my doctor came to talk to me again. She said that all the blood tests hadn’t shown anything unusual. That the echo had been normal and showed nothing of concern and that the neurologists would be back later to take another look at me. She also said that they thought it would be best if I went home in the afternoon because all of the other tests could be done as an outpatient a well. I was glad to be able to go home. I too felt like I didn’t belong in a hospital with all the dying, seriously ill patients. The doctor was really nice. She said that everyone really wanted to help me, but that more tests would be needed and that those tests took time and should best be done as an outpatient.
At around 2 am a group of about twelve people in white coats came into my room and gathered around my bed. I felt very awkward. Then, a lady stepped forth and introduced herself as Dr. Wiesman, Assistant Professor of Neurology at the BU Medical School. She wanted to take another look at me. She did the ‘follow my finger’ exam again, tested my reflexes once more and then had me walk. I still couldn’t do the heel to toe thing but pointed out that I wasn’t sure whether I had been able to do that to being with. I also pointed out that the skin around my right knee was numb. She examined it but didn’t seem to attach much importance to it. Neither did I, on that matter (though the skin is still numb as I type now.)
Eventually one of the medical students came in and informed me that they would discharge me in the afternoon and that any further tests that were necessary should be continued as an outpatient. She said for me to follow up with Dr. McBride and see Dr. Reiskin, the psychiatrist at the Student Health Centre. She also said that I should give Dr. Tyler a call and arrange to see him again because they all felt it was best if I saw just one person who would supervise all the testing. At around 4 pm I signed my discharge form and was free to go.
I swayed down the hallway towards the elevator. When I got downstairs I called myself a cab. I stood outside waiting for a while. That was already too exhausting for me. I felt so tired and weak that I had to sit down on one of the barrels that had been placed in front of the hospital as ash trays. Yes, I was desperate enough to go sit on an ashtray while wearing my white coat. Eventually, after 10 minutes which seemed like a lifetime to me, the cab arrived and took me home.
When I got home, I had trouble opening the door to my building because it requires sliding my ID card through a card reader. After three failed attempts due to incontrollable shaking I succeed. I stumbled into the elevator and waddled towards my room. I was very much out of breath when I arrived and had to lie on my bed immediately to recover. There I lay, feeling miserable again, thinking how pointless this whole hospital stay had been. I also needed to go to the pharmacy to have my prescription filled but felt incapable of leaving the house. I was too tired and weak. Instead, I had a bath. I sat in the tub, warm water enveloping my body, trying to wash away all the hospital germs. Then I quickly called my parents to keep them updated and afterwards fell into bed and slept.
Thus ends my account. I am still no further than I was on Monday. I still do not know what is wrong with my, and maybe I never will. I have always hoped that I would get better soon. Now, as that hope is beginning to fade, I am forced to make that final sacrifice: I will have to sacrifice my studies for my health. I always wanted this. I still want this but I am physically incapable of leaving my room. I will withdraw from university on Monday.
So here ends my future and maybe, here starts another one.
I now have to rethink my life.