Neurology is a vague science... more of a suggestion really...
Three days after my last post something horrible happened. I was at work and after running change to a cashier I returned to the front to watch my lines and realized my arm felt odd. It had fallen asleep. I was not too concerned at the time because I know I am a hypochondriac and instead of flying into a panic I managed to convince myself that I had merely pinched a nerve and it would feel better soon. It wasn't the first time something like that happened to me. I have had previous occasions where random parts of my body fell asleep from time to time. So I pushed it to the back of my mind and went on with my day. When I came home I dug out the heating pad (which my husband affectionately calls his "girlfiend") and sat with it most of the evening. The next 2 days I was off work and spent much of the time in my recliner hoping that the weird feeling would go away, but it got worse. By Saturday when I went back to work I was numb on half my body. I could feel the numbness as if my nerves had been separated from the right half of my body. every part of it was completely numb. Girls, if you have never had a breast go numb I do not recommend the experience (especially when your bra shifts). I muddled through my shift at work Saturday and mentioned the numbness to my husband when I returned home. I must admit I did not tell him the extent of it right away because I did not want to alarm him. He is my rock and I knew if I saw worry in his face it would send me over the edge and into histeria. I could not afford a ER visit and I was sure that was in my future if I paniced. Already my coworkers were urging me to see a doctor and voicing their concern over my stranger than normal behavior. On Sunday I went through my shift at work and realised that I was now walking with a odd draging limp. I had seen this gait many times before in my life and that is what made the decision to see a doctor for me. I was walking like my mother had when she was able. Oh God I had MS. It was happening. My biggest fear had come to light. Can I freak out now?
Sunday brought with it a weekly dinner with my husband's family which I very much enjoy. I have always loved being with family and my husband's family has always accepted me as one of their own crazy bunch from day one. When I voiced my concerns to my sister-in-law she was visibly worried and urged me to call the doctor so Monday morning with the urging from my husband and his family I made the call. They had an opening for that afternoon and I readily agreed. I was supposed to work that day until 7pm so I had thought I would just go to the doctor on my lunch break and return to work. Trying to make myself believe that it was all in my head and that I was severely over-reacting.
I went to lunch late and picked up my husband and we drove the 10 miles to my doctor's office. After checking in and waiting a few minutes I was ushered into one of the exam rooms to wait. The nurse came in and did the basic checks and then left. I sat alone while waiting for my doctor and after what felt like an eternity, but what was probably only a few minutes he came in. After dispensing with the usual pleasentries he asked me a few questions as to how this all started. After I had explained the previous few days to him he did some strength, balance, and reflex tests that I had seen countless doctors do with my mother. When he had finished he told me that it was likely a nervous system problem and that we would schedule an MRI of my brain along with blood tests to rule out thyroid and diabetes issues. I mentioned to him my intense claustrophobia and he perscribed me a nerve pill for the MRI. Can I freak out now?
It wasn't all in my head. There was a problem. The doctor agreed. Oh crap. Don't think about it. Pretend its not happening. Its probably just a pinched nerve. Its a stroke Don't panic. Its MS
I decided against returning to work that day. Instead I spent the rest of the afternoon playing computer games and watching movies with my husband. Willing myself to believe this wasn't happening, and trying to lose myself in the stories flickering on the screen.
My next great task was to explain to my bosses what was going on. My immediate supervisor had not been there the previous day so on Tuesday when I went back to work I caught her early in the day and told her that I needed to speak with her reguarding a serious matter. She worried that there was something going on with one of the other CSMs as I am usually the one that brings the issues to her when there are any. I told her it had nothing to do with anyone but me and that caught her attention. A short time later we shut ourself in the accounting office and I explained to her everything I knew was happening and that I would be taking all the time off I needed to find out what was going on. She was very supportive. That afternoon the doctor's office called and they were very apologetic but the blood they had drawn was left in the office overnight because the lab was unaware that the doctor's office was open the day after New Years. They said they would send orders for lab work to be done at the hospital the same day of my MRI.
That next day I had my first MRI. I made sure to take off my wedding rings at home and dressed in comfortable clothing that had no metal and my husband and I headed to the hospital. I took my nerve pill on the way to the hospital and was distubingly calm waiting to be slid into the tiny machine. My father joined us in the waiting room as I had called my parents after my doctors appointment. My father did not help the sitation any as he spoke of MS and all the things that went with it as we waited. Can I freak out now? When the technitian finally ushered me into the MRI area she allowed me to stay in my comfortable clothing forgoing the hospital gown. She was very patient with me and placed a cloth over my eyes to help with the claustrophobia so that even if I opened them I would not to be able to see how close the sloping walls of the machine were to my face. She also gave me a squeeze ball to hold and told me that if I needed out at any time during the procedure that all I had to do was squeeze it and she would stop the machine. As I lay with my head enclosed in the plastic casing I listened to the knocking of the MRI machine. To keep myself calm I tried to connect each different sound the machine made to a different video game. (I am a dork, how did that become my happy place?) I heard Asteroids, Space Invaders, and even a few sounds from Super Mario. Half-way through the ordeal I was slid out of the machine so that the technitian could inject contrast into my veins and then slid me back in for the scecond half of my torture. When they believe they had finally taken enough pictures of all my marbles I was removed from the machine and delivered back to my father and husband. My father left and my husband and I headed down the hall to have my blood drawn again. When my fun at the hospital was finally over my husband and I stopped for some lunch and then headed home. I knew from my mother's experiences that it would probably be at least a few days before I would hear the results and I steeled myself to wait.
Four hours after we returned home as my husband and I sat watching television my phone rang. It was not a number I recognised but it was the right city code for my doctor's office. I answered and found myself speaking to one of the nurses that works for my doctor.
"The radiologist found something... it doesnt look like cancer or MS so thats good, but there is definately something there. The next step is to see a neurologist, is that something you would be interested in?" uhm.. yes, thank you.... "Okay, we will set up an appointment and give you a call back." I heard the line disconnect and sat immobile, the phone forgotten in my hand. My husband asked what the phone call was as my cell phone slid from my hand and into the chair beside me. Oh god. What the hell. There's something in my head. CAN I FREAK OUT NOW? I just looked at him as the first tear of many slid down my cheek. CAN I FREAK OUT NOW!?! He asked me what was going on and I reiterated what had been told to me. I made a phone call to my father to tell him before descending into histeria. There was something in my brain. They saw it. Its there. Its not all in my head, its actually in my head! My husband called his mother and had her call my sister-in-law. She and our 15 year old neice came over and she helped me calm down. By this time I was badly shaken, and I began to become angry. What did they mean by telling me this over the phone?! Couldn't they give me more answers?! Why did they ask such stupid questions, of course I wanted to see a neurologist. Oh my god, what if they want to do surgery? What if its a cyst. They said it wasn't cancer so it can't look like a tumor. What if its a blood clot. What if its an aneurism. What if, what if, what if. Am I going to die? Are they going to have to shave my head? But what about my hair? Oh god please tell me they won't have to cut my hair! Its odd what you think of when you're in shock.
I was still numb down one side of my body, and now I was badly shaken. The next morning I had a call from the doctor's office wake me. The nurse ran through the exact thing that I had been told, adding that the spot was "...in the deep cortical region". She asked again if I wanted to see a neurologist and I agreed yet again. The next call from the nurse gave me a date to see the neurologist they had refered me to. Feburary 6. An entire month away. WHAT? I had to wait a month for more answers. A whole bloody month!
My husband and I headed to the drug store that day and we purchased my first cane. I was still walking with that dragging limp and the cane steadied me. I felt weak and exhausted and we hoped the cane would help.
I returned to work the next day and arrived early because I knew it would start as soon as I walked in the door. Before I clocked in I had to stop and explain what was going on numerous times. While I waited for keys in the back hallway I explained it again. I spent my first hour of work telling people over and over again what was going on. I was emotionally and physically drained and could barely manage to stand, even with the cane. I ended up spending the rest of the day working at the service desk from a chair while I gave up my position to one of the back-up CSMs.
Throughout the rest of the month I was increasingly tired and clumsy. I dropped things, I forgot orders, and I spent many of my early shifts doing as much of my work from one of the benches at the front as I could. I was surprised by the number of customers that I had to explain my new disability to, but I shouldn't have been. I had become a regular face to many of our customers having spent 6 years working in the same place in our small city.
The month dragged by, each day moving me a little closer to the answers I so desperately needed. I do have to say that I would not have been able to stand it without the love and support of all my friends and relatives, here and online. My husband tried to deflect my newfound disability with humor. He pronounced my problem to be a brain slug, and that I was his weeble-wobble. (weebles wobble but they don't fall down.) When I explained my disability to people I began telling them that the MRI just showed I still had one of my marbles. At work we joked that the spot was really the Walmart smiley-face trying to break free.
Finally the day came that I was going to see the neurologist. We gathered the discs of my MRI and in the company of my father we headed to Wichita. We easily found the doctor's office and were the only ones in the waiting room. My appointment was near the end of the day. We waited for a few minutes and were ushered into an exam room. Again a nurse did all the preleminary checks and left us to wait for the doctor. This time I had both my father and my husband accompany me into the room. I was determined not to hear bad news alone.
The doctor came in and took down my medical history and then left again. He came back after a few minutes and asked more questions and then left again to look at my MRI. He returned to the room after only a few minutes and said that he too saw the spot. He began to speak of MS and strokes. He then did a more detailed battery of strength, balance, and reflex tests. He had a long reflex stick and tested more places than I knew there were reflexes for. He left the room again and I teased my husband that he just sat by and watch the doctor beat me with a stick. The doctor returned and said he wanted to run another MRI but this time it was to be of my cervical spine. He also wanted to do some more blood tests. He told me that I am at a high risk for stroke because I am over-weight, smoke, and have migraines. With that my visit came to an end and he took us out to the receptionist so she could schedule the MRI and my next appointment with the neurologist wouldn't be until April. They scheduled the MRI for the 8th of February at the same hospital and then I was taken in for more blood work. The lab tech struggled to find a vein and after sticking me twice and taking a gallon of blood I was sent home.
I had another nerve pill for my second MRI and I even had the same tech. She remembered me and was as kind as the first time. I told her I really had to stop coming to see her when it was all over. I was called by the neurology office about the results of the second MRI that same day. They told me they saw nothing in my spine so the doctor wanted to do another test. I was scheduled for a visual evoke potential on Feburary 23rd in Wichita again. The VEP checks to see if there is a delay in the speed in which my brain registers what I see has been compromised by damage to the nerve sheath that would be indicative of MS.
The next day the neurologist's office called and they told me that the VEP was normal. That was the last I heard from my neurologist. There were no more tests to be run and I still had no answers.
I resolved myself to set in for the waiting game again. By this time I had been dealing with all this for nearly two months. Two months of terrifying thoughts running through my head. Two months of waiting to hear something. Two months of not knowing what is wrong with me. Two months of analizing every little twinge and ache to see if it might be another symptom.
I woke for work this past Saturday glad that I was only working a short shift. I spent the morning chatting with my friends at work and looking forward to when I would be off. After work I headed to see some friends and spent the afternoon chatting and enjoying each others company. I was home a little after 8pm and watched a few shows with my husband before heading to bed. Sunday I woke dizzy and exhausted. It was going to be one of my bad days. I had noticed early on that when I am tired my head droops to the side and I am unable to hold it up for any length of time. This day was worse. I could barely keep my eyes open, when I did stand I would have to hold on to something along with my cane and stand there a moment while I waited for the floor to stop moving beneath me. Most of my coworkers asked why I didn't go home and I told them I couldn't afford to. I wound up spending the day in a chair at the service desk again. I kept getting questioned by the customers I was helping if I was alright. It struck me as odd each time that they would show such concern. It was only later when we were at family dinner that I realised that I was doing that badly with comments from my in-laws that I looked pale and that my husband should take me home.
Monday morning I dragged myself out of bed and got ready for work. I felt out of sorts but could not put my finger on the problem. I sat in my recliner and tried to rally the strength I needed to make it to the car, and then through my day. As I sat there I noticed a tremor in my left hand. It was not the first time my arm shook and I had atributed it to using the cane every day. Then as I watched my hand shake my head began to mimic it. I tried to will myself to stop the trembling and again tried to convince myself that it was all in my head. I could not stop it for a few minutes but finally it did. I headed into work with the idea that it had to have been a fluke. Perhaps my neck was tight from the use of the cane. I reached work and just the short walk from the car to the store left me exhausted and trembling again. There was a group of my coworkers grouped together and they took one look at me and told me to leave. I told them I would go speak to managment and make my way to the back. I clocked in and went to the personell office to call my supervisor. The personell director had me sit with her and we talked about some of the things I've been going through while waiting for my supervisor to join us. The tears began to fall as I sat there with my cane leaned on my leg and my head trembling. When my supervisor joined us she urged me to visit the ER. She told me to leave and that my husband needed to play the bad guy and beat the doctors into a diagnosis. I left work and came home. I called my doctor and they just suggested that I rest and call the neurologist. I called the neurologist office and got a recording so I left a message. I called in the next day and spent the day sleeping and trying to recapture some of my very limited energy. The neurologist office called me back and said they wanted to see me to see about the tremor. My appointment was moved up to next week. I called in again today and spent most of today in bed as well. I still am trembling but not as much. We shall see what tomorrow brings.
I just want to know what is going on inside my head.
Sunday brought with it a weekly dinner with my husband's family which I very much enjoy. I have always loved being with family and my husband's family has always accepted me as one of their own crazy bunch from day one. When I voiced my concerns to my sister-in-law she was visibly worried and urged me to call the doctor so Monday morning with the urging from my husband and his family I made the call. They had an opening for that afternoon and I readily agreed. I was supposed to work that day until 7pm so I had thought I would just go to the doctor on my lunch break and return to work. Trying to make myself believe that it was all in my head and that I was severely over-reacting.
I went to lunch late and picked up my husband and we drove the 10 miles to my doctor's office. After checking in and waiting a few minutes I was ushered into one of the exam rooms to wait. The nurse came in and did the basic checks and then left. I sat alone while waiting for my doctor and after what felt like an eternity, but what was probably only a few minutes he came in. After dispensing with the usual pleasentries he asked me a few questions as to how this all started. After I had explained the previous few days to him he did some strength, balance, and reflex tests that I had seen countless doctors do with my mother. When he had finished he told me that it was likely a nervous system problem and that we would schedule an MRI of my brain along with blood tests to rule out thyroid and diabetes issues. I mentioned to him my intense claustrophobia and he perscribed me a nerve pill for the MRI. Can I freak out now?
It wasn't all in my head. There was a problem. The doctor agreed. Oh crap. Don't think about it. Pretend its not happening. Its probably just a pinched nerve. Its a stroke Don't panic. Its MS
I decided against returning to work that day. Instead I spent the rest of the afternoon playing computer games and watching movies with my husband. Willing myself to believe this wasn't happening, and trying to lose myself in the stories flickering on the screen.
My next great task was to explain to my bosses what was going on. My immediate supervisor had not been there the previous day so on Tuesday when I went back to work I caught her early in the day and told her that I needed to speak with her reguarding a serious matter. She worried that there was something going on with one of the other CSMs as I am usually the one that brings the issues to her when there are any. I told her it had nothing to do with anyone but me and that caught her attention. A short time later we shut ourself in the accounting office and I explained to her everything I knew was happening and that I would be taking all the time off I needed to find out what was going on. She was very supportive. That afternoon the doctor's office called and they were very apologetic but the blood they had drawn was left in the office overnight because the lab was unaware that the doctor's office was open the day after New Years. They said they would send orders for lab work to be done at the hospital the same day of my MRI.
That next day I had my first MRI. I made sure to take off my wedding rings at home and dressed in comfortable clothing that had no metal and my husband and I headed to the hospital. I took my nerve pill on the way to the hospital and was distubingly calm waiting to be slid into the tiny machine. My father joined us in the waiting room as I had called my parents after my doctors appointment. My father did not help the sitation any as he spoke of MS and all the things that went with it as we waited. Can I freak out now? When the technitian finally ushered me into the MRI area she allowed me to stay in my comfortable clothing forgoing the hospital gown. She was very patient with me and placed a cloth over my eyes to help with the claustrophobia so that even if I opened them I would not to be able to see how close the sloping walls of the machine were to my face. She also gave me a squeeze ball to hold and told me that if I needed out at any time during the procedure that all I had to do was squeeze it and she would stop the machine. As I lay with my head enclosed in the plastic casing I listened to the knocking of the MRI machine. To keep myself calm I tried to connect each different sound the machine made to a different video game. (I am a dork, how did that become my happy place?) I heard Asteroids, Space Invaders, and even a few sounds from Super Mario. Half-way through the ordeal I was slid out of the machine so that the technitian could inject contrast into my veins and then slid me back in for the scecond half of my torture. When they believe they had finally taken enough pictures of all my marbles I was removed from the machine and delivered back to my father and husband. My father left and my husband and I headed down the hall to have my blood drawn again. When my fun at the hospital was finally over my husband and I stopped for some lunch and then headed home. I knew from my mother's experiences that it would probably be at least a few days before I would hear the results and I steeled myself to wait.
Four hours after we returned home as my husband and I sat watching television my phone rang. It was not a number I recognised but it was the right city code for my doctor's office. I answered and found myself speaking to one of the nurses that works for my doctor.
"The radiologist found something... it doesnt look like cancer or MS so thats good, but there is definately something there. The next step is to see a neurologist, is that something you would be interested in?" uhm.. yes, thank you.... "Okay, we will set up an appointment and give you a call back." I heard the line disconnect and sat immobile, the phone forgotten in my hand. My husband asked what the phone call was as my cell phone slid from my hand and into the chair beside me. Oh god. What the hell. There's something in my head. CAN I FREAK OUT NOW? I just looked at him as the first tear of many slid down my cheek. CAN I FREAK OUT NOW!?! He asked me what was going on and I reiterated what had been told to me. I made a phone call to my father to tell him before descending into histeria. There was something in my brain. They saw it. Its there. Its not all in my head, its actually in my head! My husband called his mother and had her call my sister-in-law. She and our 15 year old neice came over and she helped me calm down. By this time I was badly shaken, and I began to become angry. What did they mean by telling me this over the phone?! Couldn't they give me more answers?! Why did they ask such stupid questions, of course I wanted to see a neurologist. Oh my god, what if they want to do surgery? What if its a cyst. They said it wasn't cancer so it can't look like a tumor. What if its a blood clot. What if its an aneurism. What if, what if, what if. Am I going to die? Are they going to have to shave my head? But what about my hair? Oh god please tell me they won't have to cut my hair! Its odd what you think of when you're in shock.
I was still numb down one side of my body, and now I was badly shaken. The next morning I had a call from the doctor's office wake me. The nurse ran through the exact thing that I had been told, adding that the spot was "...in the deep cortical region". She asked again if I wanted to see a neurologist and I agreed yet again. The next call from the nurse gave me a date to see the neurologist they had refered me to. Feburary 6. An entire month away. WHAT? I had to wait a month for more answers. A whole bloody month!
My husband and I headed to the drug store that day and we purchased my first cane. I was still walking with that dragging limp and the cane steadied me. I felt weak and exhausted and we hoped the cane would help.
I returned to work the next day and arrived early because I knew it would start as soon as I walked in the door. Before I clocked in I had to stop and explain what was going on numerous times. While I waited for keys in the back hallway I explained it again. I spent my first hour of work telling people over and over again what was going on. I was emotionally and physically drained and could barely manage to stand, even with the cane. I ended up spending the rest of the day working at the service desk from a chair while I gave up my position to one of the back-up CSMs.
Throughout the rest of the month I was increasingly tired and clumsy. I dropped things, I forgot orders, and I spent many of my early shifts doing as much of my work from one of the benches at the front as I could. I was surprised by the number of customers that I had to explain my new disability to, but I shouldn't have been. I had become a regular face to many of our customers having spent 6 years working in the same place in our small city.
The month dragged by, each day moving me a little closer to the answers I so desperately needed. I do have to say that I would not have been able to stand it without the love and support of all my friends and relatives, here and online. My husband tried to deflect my newfound disability with humor. He pronounced my problem to be a brain slug, and that I was his weeble-wobble. (weebles wobble but they don't fall down.) When I explained my disability to people I began telling them that the MRI just showed I still had one of my marbles. At work we joked that the spot was really the Walmart smiley-face trying to break free.
Finally the day came that I was going to see the neurologist. We gathered the discs of my MRI and in the company of my father we headed to Wichita. We easily found the doctor's office and were the only ones in the waiting room. My appointment was near the end of the day. We waited for a few minutes and were ushered into an exam room. Again a nurse did all the preleminary checks and left us to wait for the doctor. This time I had both my father and my husband accompany me into the room. I was determined not to hear bad news alone.
The doctor came in and took down my medical history and then left again. He came back after a few minutes and asked more questions and then left again to look at my MRI. He returned to the room after only a few minutes and said that he too saw the spot. He began to speak of MS and strokes. He then did a more detailed battery of strength, balance, and reflex tests. He had a long reflex stick and tested more places than I knew there were reflexes for. He left the room again and I teased my husband that he just sat by and watch the doctor beat me with a stick. The doctor returned and said he wanted to run another MRI but this time it was to be of my cervical spine. He also wanted to do some more blood tests. He told me that I am at a high risk for stroke because I am over-weight, smoke, and have migraines. With that my visit came to an end and he took us out to the receptionist so she could schedule the MRI and my next appointment with the neurologist wouldn't be until April. They scheduled the MRI for the 8th of February at the same hospital and then I was taken in for more blood work. The lab tech struggled to find a vein and after sticking me twice and taking a gallon of blood I was sent home.
I had another nerve pill for my second MRI and I even had the same tech. She remembered me and was as kind as the first time. I told her I really had to stop coming to see her when it was all over. I was called by the neurology office about the results of the second MRI that same day. They told me they saw nothing in my spine so the doctor wanted to do another test. I was scheduled for a visual evoke potential on Feburary 23rd in Wichita again. The VEP checks to see if there is a delay in the speed in which my brain registers what I see has been compromised by damage to the nerve sheath that would be indicative of MS.
The next day the neurologist's office called and they told me that the VEP was normal. That was the last I heard from my neurologist. There were no more tests to be run and I still had no answers.
I resolved myself to set in for the waiting game again. By this time I had been dealing with all this for nearly two months. Two months of terrifying thoughts running through my head. Two months of waiting to hear something. Two months of not knowing what is wrong with me. Two months of analizing every little twinge and ache to see if it might be another symptom.
I woke for work this past Saturday glad that I was only working a short shift. I spent the morning chatting with my friends at work and looking forward to when I would be off. After work I headed to see some friends and spent the afternoon chatting and enjoying each others company. I was home a little after 8pm and watched a few shows with my husband before heading to bed. Sunday I woke dizzy and exhausted. It was going to be one of my bad days. I had noticed early on that when I am tired my head droops to the side and I am unable to hold it up for any length of time. This day was worse. I could barely keep my eyes open, when I did stand I would have to hold on to something along with my cane and stand there a moment while I waited for the floor to stop moving beneath me. Most of my coworkers asked why I didn't go home and I told them I couldn't afford to. I wound up spending the day in a chair at the service desk again. I kept getting questioned by the customers I was helping if I was alright. It struck me as odd each time that they would show such concern. It was only later when we were at family dinner that I realised that I was doing that badly with comments from my in-laws that I looked pale and that my husband should take me home.
Monday morning I dragged myself out of bed and got ready for work. I felt out of sorts but could not put my finger on the problem. I sat in my recliner and tried to rally the strength I needed to make it to the car, and then through my day. As I sat there I noticed a tremor in my left hand. It was not the first time my arm shook and I had atributed it to using the cane every day. Then as I watched my hand shake my head began to mimic it. I tried to will myself to stop the trembling and again tried to convince myself that it was all in my head. I could not stop it for a few minutes but finally it did. I headed into work with the idea that it had to have been a fluke. Perhaps my neck was tight from the use of the cane. I reached work and just the short walk from the car to the store left me exhausted and trembling again. There was a group of my coworkers grouped together and they took one look at me and told me to leave. I told them I would go speak to managment and make my way to the back. I clocked in and went to the personell office to call my supervisor. The personell director had me sit with her and we talked about some of the things I've been going through while waiting for my supervisor to join us. The tears began to fall as I sat there with my cane leaned on my leg and my head trembling. When my supervisor joined us she urged me to visit the ER. She told me to leave and that my husband needed to play the bad guy and beat the doctors into a diagnosis. I left work and came home. I called my doctor and they just suggested that I rest and call the neurologist. I called the neurologist office and got a recording so I left a message. I called in the next day and spent the day sleeping and trying to recapture some of my very limited energy. The neurologist office called me back and said they wanted to see me to see about the tremor. My appointment was moved up to next week. I called in again today and spent most of today in bed as well. I still am trembling but not as much. We shall see what tomorrow brings.
I just want to know what is going on inside my head.