Last reply


Feeling like I want to end it all

I had the day from hell on Saturday. I've been really poorly with a chest infection for about three weeks. Due to being on Fingolimod my immune system is very weak. It wouldn't seem to shift even with antibiotics. Then last Monday I developed numbness in my lower back accompanied by some severe nerve pain. Then discovered I couldn't go for a number two for five days. By Friday I was feeling really poorly so went to the doctors and my GP thought it could be this cauda equina syndrome thing. I'd never even heard of it but it's basically where the nerves in your lower lumber are compressed and it leads to the symptoms of bladder and bowel retention, pain and then eventually you become completely incontinent... which was obviously scary as fuck! My GP rang the hospital as she wanted to do a direct transfer and they said they wouldn't take me as my symptoms didn't exactly meet the criteria. Then my GP rang my MS nurse at The Royal Free. She said she'd speak to one of the neurologists there and then call me back to tell me whether I needed to go to A&E or not. When I finally got a call back from my GP she told me I had to go to A&E and it was 7pm on a Friday night... I was like fuck that after being up since 5am. I knew exactly what to expect! So anyway, I took myself to A&E for 8am on the Saturday morning (yesterday) and then begun the hellish day. Waited till 11am to be seen by one doctor, then waited again to be seen by an orthopaedic doctor, then waited for the orthopaedic doctor to get advice from his registrar. At 3ish we were told we were going to be blue lighted in an ambulance to Addenbrookes hospital. Apparently, if you don't have the cauda equina syndrome treated immediately by an operation from neurosurgeons the affects of it cannot be reversed. When we got to Addenbrookes I expected to be going straight into the MRI scanner but no... more waiting to be assessed by a neurosurgeon and my third neurological examination of the day. Then I had to wait till 9pm to go into the actual MRI scanner. I wasn't allowed anything to eat during this whole time in case they needed to operate on my spinal cord. It was absolutely fucking terrifying! I had my MRI and by 10pm I'd had enough and we needed to get back from Cambridge and the last train was 11:15pm! So I decided to go and at 11:40pm they called to say it wasn't this cauda equina syndrome thing. By the time I got in it was 12:30. I did fourteen hours in fecking hospital. Still no closer to knowing what the heck has caused the numbness but thankfully the other symptoms are getting better. I went gone into work yesterday (the Sunday after all this happened) to everyone's utter surprise. I just so needed to do something normal.. anything that wasn't doctors, nurses, blood tests, MRI's. I just wanted to feel like I could blend in and disappear from the craziness. Apparently this cauda equina thing can happen to people with MS at anytime so now significantly frightened of that possibility! In fact there was another lady with MS being investigated for the same thing as me. Thing is I just can't do this anymore. I'm at work and pretending to be OK when I'm not. This illness seems to have tarnished everything in my life. I'm constantly hitting the invisible force field of fatigue. My hands are continually tremoring despite medication. I can't think straight and do the tasks that I've been doing here for over eleven years. I can't walk without a stick even though I'm 33. I don't remember a day that I haven't been in neuropathic pain. I feel like I'm alone on this island and no one can reach me. I'm tired of drugs, MRI's, Doctors who've only read about MS in text books. My life feels like it's slowly ebbing away and I can't catch it as it flows like water through my hands. I can't see an end to this other than to.... I just want to be free from it all.

@ashia2013 , I sympathise with the horrific experience that you have recently encountered with our NHS. It's hardly surprising they're going into potential meltdown, when it takes that many medical professionals to determine that you haven't got a condition that a GP had probably read about in a medical journal the night before. However, we shouldn't let fiascos like this cloud our perception of life. Yes, it can be difficult with MS, but life can be difficult generally for any number of reasons. You did the right thing in getting back to normality. Let this nightmare disappear into history, dust yourself down and carry on. You owe it to your nearest and dearest to keep a smile. It's obvious from your profile photo that he dotes on you. Onwards and upwards, eh? :wink:


@ashia2013 - please contact your MS nurse and ask for an urgent referral to your mental health services. There is help available to help you address why you feel like this and how to turn yourself around, and leave the negative thought processes behind. There may even be specialist services for people with chronic conditions like MS. I appreciate that you are sick of hospital visits at the moment, but please don't let that put you off asking for the help that you need. Looking after your mental health is just as important as looking after your physical health.