EditedLast reply


Never ending trauma

Hi guys I was advised by my MS advisor to join this app today because I wanted to share my endless trauma regarding my RRMS. I was diagnosed last year with RRMS - it felt like an intensive rollercoaster ride that wouldn’t end and I’m finding it difficult to accept my diagnosis. I was only 21 when I was first diagnosed and now I’m 22. The issues that I was challenging through in November 2021 was when I was experiencing new symptoms such as black outs, nausea, dizziness, balance coordination issues, blurred vision, double vision, etc (the list goes on) lol. I attempted to reach out to my MS nurse in November 2021 I tried calling her several times, however no response. For the last two-three days I left voice notes hoping she would respond because this was an emergency and I thought I will have a relapse soon because my new symptoms were progressing rapidly. My MS nurse didn’t respond - I felt quite hopeless at this point but I remembered that my neurologist would review me in December so I had to wait a few weeks for this follow up appointment. I was quite relieved to be fair (even with the aggressive symptoms) that hopefully my symptoms would be examined upon. A few weeks went by and it was nearly time for my appointments I had to call central lines appointment because I forgot the date of my neurology appointment (hahahaha who can relate? lol my ms always gets ahead of me). When I called them they told me my appointment was actually cancelled by my MS nurse which didn’t make any sense to me at all, as I never provided her consent, she didn’t respond back to me when I was having all of these on going issues (which are present today and I’ll get to that part). One of the members in the team told me that she did not provide a reason as to why she cancelled it so I thought maybe my neurologist wasn’t in? In fact he was in! One of the members had checked and mentioned that he was working on his duties that day and I was frustrated because I had no idea my appointment was cancelled. Imagine if I hadn’t called I would have to go through such a stressful day and that journey would have been a long ride (I suffer from fatigueness too) just to find out that my appointment had been cancelled. I was upset and when the following day it was my infusion - I take the Tysabri medication. I thought maybe I should inform the MS team about my symptoms hopefully they could contact my neurologist. I told one of the nurses at the clinic and she told me I was tested positive for the JCV virus (I was negative before) I was in shock and I suffer from anxiety , everything was so vivid for me that moment and those images still prevail up until today because I was experiencing all of these symptoms and she told me that my MS nurse had already “ addressed “ this three months ago, which was false. I wasn’t aware of this along with the repeat of the blood tests three months ago. The nurse wasn’t supportive at all, I tried to reconcile the situation and asked her if I could speak to my neurologist and if she could arrange an emergency appointment. She mentioned I would see my neurologist (the doctors name I mentioned who usually reviews me) that he would come and see me after 2 hours. After my infusion I had to wait 2 hours just to find out that I was reviewed by one of the MS team’s doctor specialists lol. The doctor specialist who was a neurologist too but not a consultant as he doesn’t deal with such issues of medications, MRI review, the next alternative steps etc. He examined my mobility and noticed that there were physical mobility changes, when I had indicated these issues to him I was shocked but rather not surprised because I knew something was wrong with me from the very start of my symptoms. Thus, I told him that I need to be further relayed upon, please could you liaise with my neurologist about these issues because I told him I can assure him that I will have a relapse soon or I am going to have new symptoms. The doctor specialist mentioned he would negotiate with my neurologist and address this as soon as possible. Also, I told him I need to be in an MRI as soon as possible because I need reassurance, he told me he will do that for me. I felt relieved at some point because someone finally listened to me. (I was wrong lol) after a few months went by. I was waiting for this on going issue to be resolved because I kept having black outs and having issues with my walking and my balance. I felt dizzy to the point where I collapsed on the floor. I told the nurse at the MS clinic all of these symptoms and she wrote it in a written document I told her when is my appointment with my neurologist and when will this issue be resolved I need to be on an MRI. Omg again my symptoms was left neglected and untreated when she told me my neurologist was on sabbatical leave and he has no IDEA on what is going on with me at the moment. I was deceived and frustrated I told her the doctor specialist would liaise with him and he would see me as soon as possible (we have a good relationship because he knew me since I was 18 I suffer from intracranial hypertension) so he’s an ophthalmologist too. The nurse at the clinic told me that the doctor specialist already saw me which didn’t make sense when I need to be further examined. At this point I gave up and they told me they will change my monthly dosage of Tysabri to six weeks. I felt isolated and I am going through depression, I know my anxiety was becoming worse and so was my symptoms. I had no hope I wanted to give up on my life and had plans on ending my life because half of my body felt half paralysed and I was experiencing new joint pains in both of my hands and arms, leg pains, leg jerking etc. I remember talking to a patient who was middle aged and a gentlemen for assisting me to go ahead with the further examination when I found out I was tested positive for the JCV virus. I had so many emotions that was racing through my head and I couldn’t control them. When I got home I bursted into tears because I didn’t know who to discuss this too. My MS nurse can’t even do her job role properly, she’s unbothered, doesn’t care about me. I heard unpleasant experiences with other MS patients who had her as their nurse too. In April 2022 I realised I couldn’t walk properly I was having major issues with my walking and balance coordination issues. I thought this would be the end of me and I would have to be on a walking stick or a wheelchair because I wasn’t stable my walking wasn’t stable. I felt as if I wasn’t stable. I had contacted my MS nurse AGAIN and tried calling her she didn’t pick up and ignored my calls, I left her voice messages. Again, no response. I had enough and I emailed her, I was frustrated by the fact she didn’t support me throughout the whole 6 month period of my on going issues. Also, I filed a complaint against her and the MS team. Long story short she wasn’t supportive and responsive she lied and said she cancelled my appointment with my consent 😂🤣. How sad does that sound? When I was the one who was contacting her all this time and why she was the one that cancelled my appointment without my consent, also lying to the team and telling them she told me I was tested positive for the JCV virus and the repeat of the blood test. This is complete nonsense and it’s traumatising because I have to deal with such unfortunate circumstances. I kept going back and fourth with her, she told me when she “reviewed” my notes that the new MS nurse tried reaching out to me - I forgot to mention the time I found out my neurologist was on sabbatical - me and the nurse had agreed to terms to change my MS nurse I told her to remind the new MS nurse my phone number is not in use. Again, my symptoms were left untreated. I was disheartened and deceived because she reached out after one month (my NEW ms nurse) I was frustrated and told my previous MS nurse that she was the first form of contact and why didn’t she address for my new MS nurse to go on my medical file and review which other individual/family member to contact because there was family members on there to reach out too. When I spoke to my previous MS nurse I felt hopeless at this point when she advised me to go to urgent care (yes because of you and the team I am through this trauma). I went to A&E first because I didn’t want to switch positions in going to urgent care and then them telling me to go A&E. A&E told me to go to urgent care knowing I have MS. When I waited there for four hours, I felt judgement in the air. So many people were looking at me and I felt so judged on the way I was walking I felt like my invisible symptoms came to life visibly. I was crying because I know that people were talking about the way i was walking. The urgent care doctor called me in and he told me he’s not an MS specialist (at this point I gave up literally I wanted to just go home and suffer alone). The urgent care doctor mentioned I shouldn’t be here and A&E are silly to send me here knowing I’m a young MS patient and there are SO MANY COVID patients here. I was having a panic attack and he told me to quickly go home, I had to call a cab and was waiting outside for 20mins. I told the new MS nurse about my on going issues via email and she told me she will make an emergency appointment with one of the other neurologist at the neurology clinic. I attended this appointment it was the following day and the neurologist further examined me and said I am having a major relapse - at this point I felt numb, I was in tears, having a panic attack. I couldn’t explain everything that was going on. I had exams too as I’m a uni student. I felt like my life was torn. The neurologist and the new MS nurse told me to complete my assignments and my exam which was in two weeks time in the summer. Throughout that whole 6 months I couldn’t even submit ONE assignment because of my symptoms and the trauma I challenged through. The new neurologist told me that I need to have an MRI - again I’m not surprised lmao also with an LP (lumbar puncture). I was crying because I had a lumbar puncture three times in the past for my pressure to be reduced in my brain as I mentioned previously I suffer from IIH. However, when I saw my neurologist who’s also my ophthalmologist in September last year 2021 he mentioned I’m cured from it and also when I had an appointment with another doctor at the ophthalmology clinic she mentioned my MS needs to be further assessed as she mentioned my IIH is cited there’s no pressure when she was reviewing my eyes. I had my LP and MRI last week - I have never felt so suicidal like this in my life. I had plans on ending my life because of everything that happened. I complained to the hospital and I am taking legal proceedings forward. I don’t have any friends with MS besides the patient I’ve spoken to at the MS clinic. I wanted reassurance and to be acknowledged. At this point I don’t feel anything. I’m waiting upon my results and I’m trying to stay resilient. I have an wellness review meeting at my Uni. I’m scared because they told me I should repeat my second year again which I don’t want to as I’m nearly finished and I need more time to complete my assignments and further extensions which my uni doesn’t offer (I find that so weird) I need support, what do I do? I can’t even speak to my original neurologist about these issues because he’s on sabbatical for 7 months. Can someone please acknowledge the fact that I am a young person with MS and I shouldn’t be taken granted or advantage of because I’m young. I know there is age discrimination that plays a vital role here as if this was an elderly person (god forbid) then the team and the MS nurse would have acted upon their duties. I am now suffering from a viral infection I had vomited several times throughout this whole month and had told my GP about this they told me to be on antibiotics but I stopped it because I was allergic. I have never felt so unwell in my life This is my story.

I’m so sorry to hear you’ve gone through all of this. The care you have had is completely unacceptable. You are right to formally complain to the the hospital trust. Are there any other clinics you can attend rather than the one you are registered with? You have a right to state where you wish your care. I’m sure with the correct care some of these symptoms can be relieved. Please please please if you are feeling like ending your life, tell someone and have them take you straight to A&E. If you are there telling A&e doctors you are suicidal you should get seen by a specialist and hopefully they will get a neurologist involved at the same time. Im sure in time you will get in control of this which will have a positive impact on your quality of life. Please don’t give up. I know you don’t want to repeat a year of uni, but you are still young and another year won’t be too bad and may be less stressful for you. Stress will make your MS symptoms worse. Please take care ❤️


OMG, that sounds absolutely horrendous!!! I wonder if we're under the same team as my neurologist is also on a sabbatical and the nurse is incompetent. Thank you about complaining about the situation, I know it's probably causing you even more stress. As someone above has said, if you feel suicidal, please call the Samaritans and go to A&E. It's super important. They will provide support. Take care, and hang in there, hopefully things will get easier for you x