PaineFury
30-10-13, 11:47
Hello everyone, I'm Nina and I'm 28 living in SW England. Here is my story:
On 7th September I married a wonderful man I've been with for 5 years. The day was perfect but, when waking up the day after, things started to go downhill as I noticed my right-hand peripheral vision had disappeared. I stuck through it on the Sunday to attend my in-laws 40th wedding anniversary but, by Monday, I was starting to panic that nothing had improved. A sight test at my local opticians confirmed that I was missing all of my right-hand peripheral vision (in both eyes) but there was nothing actually wrong with my eyes, so I was referred to my local hospital. Another visual field test confirmed the same thing, and the next thing I know I'm being admitted for a suspected stroke! Quite daunting...
So many tests on my reflexes, my sight and my general balance were done, so many questions asked about my history, my family's history (no history of strokes at all) and any symptoms or injuries I've had in the past. What made things worse was that I was staying in a stroke ward with 3 other patients suffering with advanced Alzheimers. They would talk sleep all day and talk nonsense all night, so sleep was pretty sporadic. Mention was made of having an MRI and a lumbar puncture, but nothing seemed to actually happen and, in the meantime, various medical students visited to ask me questions, and do the same general tests. Eventually, an MRI was done and confirmed that my vision change was down to some lesions on my brain - not typical for MS but this was mentioned. At the time, I knew nothing about MS other than a family guy sketch so I just dismissed it all and carried on. A lumbar puncture was done on Monday 16th September and I was discharged with mention that someone would contact me about the 3 sets of blood tests taken. I was signed off work and so I waited.
Nothing happened - 3 weeks passed and not a peep out of anybody about this blood. I kept calling my surgery to chase this, but they were understaffed due to a lot of sickness in their staff so I was just told to keep waiting. I got impatient and wanting to know what was going on, and I remembered the various diseases mentioned whilst I was staying in the hospital (MS, Lupus, Vasculitis etc) so I decided to start Googling everything I could think of in relation to MS. I thought that, if I did this, I could find out more to prepare myself should this be the case but, when I woke up on 10th October with some numbness and hearing change I started seriously freaking out. My Googling had brought up some seriously horrible stories, horrible forum posts and I started assuming I not only had MS, I had the worse form and it was going to kill me in my sleep. I went to bed afraid that I wouldn't wake up and, despite me previously having a strong faith that only rarely gave me panic attacks about dying, I turned into a seriously negative person. I went straight to the local walk-in centre to speak to a doctor as the numbness and hearing was freaking me out.
He came across a letter from my neurologist to my GP explaining that I'd had a CIS attack, with it possibility of it being MS in the future. With the mention of MS again I was now certain I had it, and I was Googling everything I could find. I even went as far as talking to people on various forums about MS, talking to a stranger in the street who had no knowledge of MS and was seriously freaking out. I was put on Citalopram 10mg shortly after but I found myself still falling. What made things worse was that I knew stress could trigger an MS attack so the sight, the hearing and the numbness had me certain it was MS. I begged the neuro for an appointment and went to see him armed with my mother, my husband and a page of questions. In tears I read them all out to him in the hope that a second MRI would confirm I had MS - however a room full of people told me I had CIS, not MS and it will more than likely never affect me again. 2 neuros and a doctor watched me break down in tears as I felt that they were just brushing this off as depression and my dosage was upped to 20 mg. I felt so helpless, so unwanted and so isolated. My mother and husband also told me I didn't have MS, but I couldn't understand how anxiety and depression could make this happen. I explained in detail how I was suffering tremors, couldn't sleep, cried all the time and sweated excessively. I left the neuro feeling no better but he did make me do some walking and balance which also confirmed to him that I do not have MS. That was 3 weeks ago...
I feel physically no better - I still can't sleep, I still have balance issues and the trembling as well as the hearing and sight. I'm not blind, but everything is out of general focus and my right eye is different to my left eye (if memory serves, that has been the case for a while). I'm afraid to leave the house and often stay in bed until 2/3pm when I roll out and watch TV. I'm still off work atm and not sure when I will be strong enough to face going back (I do love my job). I'm sat here so convinced I have MS and it's going to kill me (even though neuros, nurses and doctors have said I don't have MS as well as family and friends.
A recent sight test confirmed my sight was getting better but I'm in a horrible loop of thinking everything wrong with me is MS, and I don't feel my sight is getting better. I Googled so much, talked to so many people online and many have said that, even if it does become MS one day (I apparently have a 20%-30% chance I think and a few people have mentioned stress may have caused the CIS attack) my life is not over. I have a friend battling lupus right now and one pregnant friend diagnosed with leukaemia so my situation could be so much worse, but I can't get this "YOU HAVE MS AND IT's KILLING YOU" out of my head". It occupies my thoughts pretty much all day every day. My fear of death has increased despite recently speaking to a group who share the same faith, and getting some wonderful affirmations but I am stuck. I am disappointing and upsetting my family, even made my mother and brother cry about this and made so many people so unhappy. I have thought about ending my life, but have never acted on it. I've also started a course in managing panic, anxiety and worry which started yesterday but I feel no better.
I just want to feel normal - get my sight, hearing and feeling back. I am finding it so hard to believe that my physical symptoms are due to anxiety but so many people are certain it is. I feel so lost, I am laying on my bed with these trembles, this sight and hearing loss and so angry that life has done this to me so soon after getting married. If I get up and go to pee I have trouble walking in a straight line but, when I notice my balance is improving, I dismiss it. I've been on Citalopram now for 19 days (11 days on 10mg, 8 days on 20mg upped after a conference call with another doctor) and really REALLY wanting to get my normal life back....
On 7th September I married a wonderful man I've been with for 5 years. The day was perfect but, when waking up the day after, things started to go downhill as I noticed my right-hand peripheral vision had disappeared. I stuck through it on the Sunday to attend my in-laws 40th wedding anniversary but, by Monday, I was starting to panic that nothing had improved. A sight test at my local opticians confirmed that I was missing all of my right-hand peripheral vision (in both eyes) but there was nothing actually wrong with my eyes, so I was referred to my local hospital. Another visual field test confirmed the same thing, and the next thing I know I'm being admitted for a suspected stroke! Quite daunting...
So many tests on my reflexes, my sight and my general balance were done, so many questions asked about my history, my family's history (no history of strokes at all) and any symptoms or injuries I've had in the past. What made things worse was that I was staying in a stroke ward with 3 other patients suffering with advanced Alzheimers. They would talk sleep all day and talk nonsense all night, so sleep was pretty sporadic. Mention was made of having an MRI and a lumbar puncture, but nothing seemed to actually happen and, in the meantime, various medical students visited to ask me questions, and do the same general tests. Eventually, an MRI was done and confirmed that my vision change was down to some lesions on my brain - not typical for MS but this was mentioned. At the time, I knew nothing about MS other than a family guy sketch so I just dismissed it all and carried on. A lumbar puncture was done on Monday 16th September and I was discharged with mention that someone would contact me about the 3 sets of blood tests taken. I was signed off work and so I waited.
Nothing happened - 3 weeks passed and not a peep out of anybody about this blood. I kept calling my surgery to chase this, but they were understaffed due to a lot of sickness in their staff so I was just told to keep waiting. I got impatient and wanting to know what was going on, and I remembered the various diseases mentioned whilst I was staying in the hospital (MS, Lupus, Vasculitis etc) so I decided to start Googling everything I could think of in relation to MS. I thought that, if I did this, I could find out more to prepare myself should this be the case but, when I woke up on 10th October with some numbness and hearing change I started seriously freaking out. My Googling had brought up some seriously horrible stories, horrible forum posts and I started assuming I not only had MS, I had the worse form and it was going to kill me in my sleep. I went to bed afraid that I wouldn't wake up and, despite me previously having a strong faith that only rarely gave me panic attacks about dying, I turned into a seriously negative person. I went straight to the local walk-in centre to speak to a doctor as the numbness and hearing was freaking me out.
He came across a letter from my neurologist to my GP explaining that I'd had a CIS attack, with it possibility of it being MS in the future. With the mention of MS again I was now certain I had it, and I was Googling everything I could find. I even went as far as talking to people on various forums about MS, talking to a stranger in the street who had no knowledge of MS and was seriously freaking out. I was put on Citalopram 10mg shortly after but I found myself still falling. What made things worse was that I knew stress could trigger an MS attack so the sight, the hearing and the numbness had me certain it was MS. I begged the neuro for an appointment and went to see him armed with my mother, my husband and a page of questions. In tears I read them all out to him in the hope that a second MRI would confirm I had MS - however a room full of people told me I had CIS, not MS and it will more than likely never affect me again. 2 neuros and a doctor watched me break down in tears as I felt that they were just brushing this off as depression and my dosage was upped to 20 mg. I felt so helpless, so unwanted and so isolated. My mother and husband also told me I didn't have MS, but I couldn't understand how anxiety and depression could make this happen. I explained in detail how I was suffering tremors, couldn't sleep, cried all the time and sweated excessively. I left the neuro feeling no better but he did make me do some walking and balance which also confirmed to him that I do not have MS. That was 3 weeks ago...
I feel physically no better - I still can't sleep, I still have balance issues and the trembling as well as the hearing and sight. I'm not blind, but everything is out of general focus and my right eye is different to my left eye (if memory serves, that has been the case for a while). I'm afraid to leave the house and often stay in bed until 2/3pm when I roll out and watch TV. I'm still off work atm and not sure when I will be strong enough to face going back (I do love my job). I'm sat here so convinced I have MS and it's going to kill me (even though neuros, nurses and doctors have said I don't have MS as well as family and friends.
A recent sight test confirmed my sight was getting better but I'm in a horrible loop of thinking everything wrong with me is MS, and I don't feel my sight is getting better. I Googled so much, talked to so many people online and many have said that, even if it does become MS one day (I apparently have a 20%-30% chance I think and a few people have mentioned stress may have caused the CIS attack) my life is not over. I have a friend battling lupus right now and one pregnant friend diagnosed with leukaemia so my situation could be so much worse, but I can't get this "YOU HAVE MS AND IT's KILLING YOU" out of my head". It occupies my thoughts pretty much all day every day. My fear of death has increased despite recently speaking to a group who share the same faith, and getting some wonderful affirmations but I am stuck. I am disappointing and upsetting my family, even made my mother and brother cry about this and made so many people so unhappy. I have thought about ending my life, but have never acted on it. I've also started a course in managing panic, anxiety and worry which started yesterday but I feel no better.
I just want to feel normal - get my sight, hearing and feeling back. I am finding it so hard to believe that my physical symptoms are due to anxiety but so many people are certain it is. I feel so lost, I am laying on my bed with these trembles, this sight and hearing loss and so angry that life has done this to me so soon after getting married. If I get up and go to pee I have trouble walking in a straight line but, when I notice my balance is improving, I dismiss it. I've been on Citalopram now for 19 days (11 days on 10mg, 8 days on 20mg upped after a conference call with another doctor) and really REALLY wanting to get my normal life back....