My return to London made me hopeful. I thought normal life was back on it is way. My steroids were completely tapered though the head ache was still there.
The day after my return, my head started spinning a little. I began vomiting constantly and my hands and my feet became numb. It felt as if they were papery. I knew something was wrong. My mom was there with me. Considering my circumstances, the warden at my halls had given me a twin room (still can't thank him enough for being so considerate). My mom rushed me to the hospital where I had been treated before. Double vision had set in by then. My consultant was away so a registrar came. He could see that I was flustered and worried so he examined me. He topped up me steroids and sent me back home. I got better for a few days but then I started getting persistently ill.
Every three four days I had attacks which made my balance organs go crazy. All the planes seemed tilted, everything around me kept moving and I could not lie down straight. When I woke up everything around me was always moving up and down. The constant nauseau and the puking made me extremely weak. All this while I revising because I knew that I could not let go of hope. Doctors had asked me to get my exams deferred but I knew that if I did that I would go psychotic and feel purposeless. I used to make at least two trips to the hospital every week and the doctors were really uncertain. A few of them even thought I was making things up which really upset me.
I took all my exams. I could see two lines instead of one whilst writing because of my double vision. Many examinors, looking at the bowl that I carried to puke in, tried convincing me to leave but I had to keep up.
When my exams ended, I wished to return to my country as soon as possible. However, my condition was so bad that I couldn't travel. My condition went from bad to worse and I had to go to the hospital's emergency room every day because I could not keep any food inside my system. The anti-sickness tablets were not working any more.
Finally, I saw my neurologist. My VEPs had been done and also a test in which they gave me shocks of elecricity to see how my bodily functions were. The VEPs showed some abnormality but my neurologist could not find any cause. The MRIs done did not show any abnormality. He thought that my stomach needed to be checked because no other reason could be found. An endoscopy was to be carried out to see if there was something wrong.
I was to be admitted to the hospital.
It is on this meeting that I also gave him the CD of the MRI of my first attack in 2011. After that I was admitted to the hospital. The doctors were not very nice to me. They thought that I was still making up stories and that it was all in my mind.
But then my Neurologist came to meet me. He told me he had some news. He said that although my blood tests showed that I had not tested positive for any of the disorders, he had been able to locate the problem. He told me that my MRI scan showed some leisons which had not be recorded on the report by the radiologist. His negligence had prevented a proper diagnosis for all these years. He told me that I had Auqaporin Negative Neurmyelitis Optica. This was determined clinically and radiologically. He also told me that 30 percent of people who get it do not test positive on the blood tests.
I asked him: 'Is it dangerous?' He responded, 'not any more than MS or Lupus which were the alternatives'. For a while, I felt happy. At least I had been diagnosed. I knew very little about what it would be. The staff at the hospital always asked me 'do you know what it means?'. I responded 'yes' though I knew very little. With time I came to know of how horrific it could be- thank you Google. However, I would rather know what I have than be stuck in a phase when I am completely uncertain about what is going on with me.
I've had one attack eversince I started the immunosupressants. I was able to preempt it because of my previous experience and deal with it on time. I don't when I will get the next attack (hopefully never) but I am actually trying to get back to life.
Sometimes it feels like I have entered a new life. The new found freedom scares me because I do not want to lose it again. I like waking up and not feeling miserable for a change. I don't complain because I know how hard it can be.
I have learned to adapt to the changes. I have a weird form of diplopia which has no medical treatment in Pakistan (where i currently am) but I have learned to not look at angles which disorient me. I have some form of a problem in my ears as well because of which everything seems to blast out loud in them. Unfortunately, it means that I am unable to listen to music with headphones (which I loved) but it is alright.
Now that my story has been told, Ill be writing about more general things about NMO and how I deal with it.
My return to London made me hopeful. I thought normal life was back on it is way. My steroids were completely tapered though the head ache was still there.
The day after my return, my head started spinning a little. I began vomiting constantly and my hands and my feet became numb. It felt as if they were papery. I knew something was wrong. My mom was there with me. Considering my circumstances, the warden at my halls had given me a twin room (still can't thank him enough for being so considerate). My mom rushed me to the hospital where I had been treated before. Double vision had set in by then. My consultant was away so a registrar came. He could see that I was flustered and worried so he examined me. He topped up me steroids and sent me back home. I got better for a few days but then I started getting persistently ill.
Every three four days I had attacks which made my balance organs go crazy. All the planes seemed tilted, everything around me kept moving and I could not lie down straight. When I woke up everything around me was always moving up and down. The constant nauseau and the puking made me extremely weak. All this while I revising because I knew that I could not let go of hope. Doctors had asked me to get my exams deferred but I knew that if I did that I would go psychotic and feel purposeless. I used to make at least two trips to the hospital every week and the doctors were really uncertain. A few of them even thought I was making things up which really upset me.
I took all my exams. I could see two lines instead of one whilst writing because of my double vision. Many examinors, looking at the bowl that I carried to puke in, tried convincing me to leave but I had to keep up.
When my exams ended, I wished to return to my country as soon as possible. However, my condition was so bad that I couldn't travel. My condition went from bad to worse and I had to go to the hospital's emergency room every day because I could not keep any food inside my system. The anti-sickness tablets were not working any more.
Finally, I saw my neurologist. My VEPs had been done and also a test in which they gave me shocks of elecricity to see how my bodily functions were. The VEPs showed some abnormality but my neurologist could not find any cause. The MRIs done did not show any abnormality. He thought that my stomach needed to be checked because no other reason could be found. An endoscopy was to be carried out to see if there was something wrong.
I was to be admitted to the hospital.
It is on this meeting that I also gave him the CD of the MRI of my first attack in 2011. After that I was admitted to the hospital. The doctors were not very nice to me. They thought that I was still making up stories and that it was all in my mind.
But then my Neurologist came to meet me. He told me he had some news. He said that although my blood tests showed that I had not tested positive for any of the disorders, he had been able to locate the problem. He told me that my MRI scan showed some leisons which had not be recorded on the report by the radiologist. His negligence had prevented a proper diagnosis for all these years. He told me that I had Auqaporin Negative Neurmyelitis Optica. This was determined clinically and radiologically. He also told me that 30 percent of people who get it do not test positive on the blood tests.
I asked him: 'Is it dangerous?' He responded, 'not any more than MS or Lupus which were the alternatives'. For a while, I felt happy. At least I had been diagnosed. I knew very little about what it would be. The staff at the hospital always asked me 'do you know what it means?'. I responded 'yes' though I knew very little. With time I came to know of how horrific it could be- thank you Google. However, I would rather know what I have than be stuck in a phase when I am completely uncertain about what is going on with me.
I've had one attack eversince I started the immunosupressants. I was able to preempt it because of my previous experience and deal with it on time. I don't when I will get the next attack (hopefully never) but I am actually trying to get back to life.
Sometimes it feels like I have entered a new life. The new found freedom scares me because I do not want to lose it again. I like waking up and not feeling miserable for a change. I don't complain because I know how hard it can be.
I have learned to adapt to the changes. I have a weird form of diplopia which has no medical treatment in Pakistan (where i currently am) but I have learned to not look at angles which disorient me. I have some form of a problem in my ears as well because of which everything seems to blast out loud in them. Unfortunately, it means that I am unable to listen to music with headphones (which I loved) but it is alright.
Now that my story has been told, Ill be writing about more general things about NMO and how I deal with it.
My return to London made me hopeful. I thought normal life was back on it is way. My steroids were completely tapered though the head ache was still there.
The day after my return, my head started spinning a little. I began vomiting constantly and my hands and my feet became numb. It felt as if they were papery. I knew something was wrong. My mom was there with me. Considering my circumstances, the warden at my halls had given me a twin room (still can't thank him enough for being so considerate). My mom rushed me to the hospital where I had been treated before. Double vision had set in by then. My consultant was away so a registrar came. He could see that I was flustered and worried so he examined me. He topped up me steroids and sent me back home. I got better for a few days but then I started getting persistently ill.
Every three four days I had attacks which made my balance organs go crazy. All the planes seemed tilted, everything around me kept moving and I could not lie down straight. When I woke up everything around me was always moving up and down. The constant nauseau and the puking made me extremely weak. All this while I revising because I knew that I could not let go of hope. Doctors had asked me to get my exams deferred but I knew that if I did that I would go psychotic and feel purposeless. I used to make at least two trips to the hospital every week and the doctors were really uncertain. A few of them even thought I was making things up which really upset me.
I took all my exams. I could see two lines instead of one whilst writing because of my double vision. Many examinors, looking at the bowl that I carried to puke in, tried convincing me to leave but I had to keep up.
When my exams ended, I wished to return to my country as soon as possible. However, my condition was so bad that I couldn't travel. My condition went from bad to worse and I had to go to the hospital's emergency room every day because I could not keep any food inside my system. The anti-sickness tablets were not working any more.
Finally, I saw my neurologist. My VEPs had been done and also a test in which they gave me shocks of elecricity to see how my bodily functions were. The VEPs showed some abnormality but my neurologist could not find any cause. The MRIs done did not show any abnormality. He thought that my stomach needed to be checked because no other reason could be found. An endoscopy was to be carried out to see if there was something wrong.
I was to be admitted to the hospital.
It is on this meeting that I also gave him the CD of the MRI of my first attack in 2011. After that I was admitted to the hospital. The doctors were not very nice to me. They thought that I was still making up stories and that it was all in my mind.
But then my Neurologist came to meet me. He told me he had some news. He said that although my blood tests showed that I had not tested positive for any of the disorders, he had been able to locate the problem. He told me that my MRI scan showed some leisons which had not be recorded on the report by the radiologist. His negligence had prevented a proper diagnosis for all these years. He told me that I had Auqaporin Negative Neurmyelitis Optica. This was determined clinically and radiologically. He also told me that 30 percent of people who get it do not test positive on the blood tests.
I asked him: 'Is it dangerous?' He responded, 'not any more than MS or Lupus which were the alternatives'. For a while, I felt happy. At least I had been diagnosed. I knew very little about what it would be. The staff at the hospital always asked me 'do you know what it means?'. I responded 'yes' though I knew very little. With time I came to know of how horrific it could be- thank you Google. However, I would rather know what I have than be stuck in a phase when I am completely uncertain about what is going on with me.
I've had one attack eversince I started the immunosupressants. I was able to preempt it because of my previous experience and deal with it on time. I don't when I will get the next attack (hopefully never) but I am actually trying to get back to life.
Sometimes it feels like I have entered a new life. The new found freedom scares me because I do not want to lose it again. I like waking up and not feeling miserable for a change. I don't complain because I know how hard it can be.
I have learned to adapt to the changes. I have a weird form of diplopia which has no medical treatment in Pakistan (where i currently am) but I have learned to not look at angles which disorient me. I have some form of a problem in my ears as well because of which everything seems to blast out loud in them. Unfortunately, it means that I am unable to listen to music with headphones (which I loved) but it is alright.
Now that my story has been told, Ill be writing about more general things about NMO and how I deal with it.