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Stories from this county…

East Sussex

Annabelle’s Story

annabelle

Me

My name is Annabelle Moult, I was born on the 5th August 1982, and I live with my Husband in Buckinghamshire UK.

What happened?

In 2007 on the 3rd September I woke up in the morning with a very bad headache and blurred vision (I initially thought I had a very bad vino hangover!!). The day carried on and I started to get really painful pins and needles in my legs, so I kept having scolding hot baths as this seemed to ease the pain. Danny (my Hubby) took me to see the Harmony Doctors at the Hospital, I was told I might be Anaemic and to go home and rest as I was going to the Doctors in the morning.

I went home and to bed, in the middle of the night I got up to go to the bathroom and collapsed. I realised that my legs were not doing anything and I could not move or get up, so shouted for Danny, saying something was wrong and we needed to get to the hospital. He had to pick me up off the floor and carry me to the car and into AandE.

Hospital

At the Hospital I was made to sit on a hard trolley for hours before someone saw me, by this time I was paralysed from my chest down and my vision was decreasing rapidly. The Doctors could not work out what was wrong with me. Over the upcoming days and weeks I had MRI Scans, Lumber Punctures, Plasma Exchange, so much blood taken every day all my veins collapsed. I was put on a very high dose of steroids for the first week to help bring down the swelling that was happening in the legions in my brain.

3 days after being in hospital I woke up and the world was black. I was blind.

I was initially at Stoke Mandeville hospital but it was decided I be moved to The John Radcliffe in Oxford due to the high standard of their Neurological Care. I was in hospital for nearly 6 months, they were unsure of what was wrong with me and due to how quickly my illness came on they informed my family that it did not look hopeful and I would more than likely never get better or out of there.

The JR were magnificent, I had Doctors around me all day every day trying to work out what had happened and why.

Luckily I was allowed to have someone (Danny, my Mum or a family member) with me all day every day, this enabled to keep some normality to my life, even if it was just someone getting me up and helping me to wash and dress.  I initially dropped down to 6 stone and was so frail and unstable I could not even put my own hair up or brush my teeth. But when I was finally able to do these every day tasks I had taken for granted previously, it was a real sense of achievement.

After approximately 6weeks of blindness I started to see shapes in the black, my eye sight continued to improve seeing black on black, then grey shadows and misty, and pixelated vision.

It was a miracle my eye sight was coming back but then I started to get spasms in my left arm and this became paralysed for a couple of weeks, now 3 limbs down and blindness, it was what one might say ‘an emotional roller coaster’.

After 4 or so months in the JR they had seen improvements and felt it best to send me to Stoke Mandeville Spinal Ward so that I could be taught how to live my life in a wheelchair. Having been such an active person prior to falling ill, playing hockey, rugby, horse riding, going to the gym numerous times a week, it was going to be a hard transition but something that I have adapted my life to learn to live with.

I did physio every day, wheelchair skills and general everyday activities to learn how to best live life in a wheelchair and being registered blind/severely visually impaired. I left hospital at the end of Feb 2008 at nearly 17stone (due to the steroids).

I have always tried to maintain a sense of humour and never ask ‘why me’ in my eyes why should it not be me?

Work

Within days of leaving the hospital, I had got myself back to work; after such a long time of being institutionalised in the four walls of the hospital I needed to get my brain back in gear and focusing on other things. My Company have been great in supporting me throughout my illness. They have made the offices accessible for me to get around and I have a large screen with magnifying software to ensure I can see what I am doing and working on. I left hospital at the end of Feb on a Friday and was back in work by the Monday!! Mad you may think, but it kept me sane. I was back to work 3 days a week for the first 6 months, just to ease me in, I was also very tiered all of the time, so I had to be careful that being back did not take me back to square one by relapsing. By the September I was back full time and have been ever since. Just because life has changed does not mean it has to stop,.

Friends and Family

I have found that it is vital to keep positive people around and unfortunately when times get hard you find out who your friends and family really are, I have lost friends through this and also pushed people away, but it has made those that stuck around even closer. My friends and family have been amazing and I could not have got to where I am now without their help, love and support. They really all are and have been amazing.

Diagnosis

It took 2 years before I was Diagnosed with Devics/NMO, so for that time until my diagnosis I felt like an alien, I did not know what was wrong with me, I had no idea what to do or what to read to help me understand my illness and I could not find a person in a similar situation to talk to. It was a 2-year battle and quite a lonely place to be, but once I was diagnosed it was easier to deal with and be able to have information to help understand what was going on inside of my body. I was able to start helping myself to get better.

I have tried so many different diets, I have tried physio, I have tried alternative medicines and therapies, and some of them I feel have worked, some I have had to walk away from!! But one day something will be found to ease the every day nerve pain I am in, build back the Mylein Sheath that has broken down around my nerves to stop the connection between my brain, eyes and legs. The unfortunate thing is that NMO is such a rare illness that there is not the awareness or the money for research.

They say NMO is incurable, but I say Never say never, one day my illness will go and I will see and walk again.

Colleen’s Story

colleenOne Friday morning in October 2006, I woke up with a slight numbness on the left side of my left foot.  It didn’t really bother me, but what did was a burning/prickly sensation round my ribs. 

I went off to the doctor who said that she thought it was shingles and sent me home with some Amytriptilline and told me to call her on Monday if spots appeared, and if not and the sensation was still there, come in to see her again!!!!  So, on Monday it was the same, but the numbness had radiated up my left leg and my right foot was also numb.  In fact I could only hobble.

Back I went.  She stuck some pins in my legs and feet and sent me to an orthopaedic doctor at the local infirmary.  I am no doctor, nor did I know what was wrong with me other than thinking it was probably a pinched nerve, but I did know that orthopaedics was not the place I needed.

I was seen by a consultant who told me I needn’t stay – I could go home armed with some Vitamin B12 tabs.  I could hardly walk.  He said he’d do a neurology referral for me.

On the Thursday it had got so bad, the banding was making me feel like I couldn’t breathe.  Both my legs were numb.  I did not at that stage have any back pain!!

I went back to A&E who told me that a referral had been done and, if I thought it was warranted, to phone my GP to get it rushed!  I went back home, feeling that it obviously wasn’t very serious and I’d just wait.  However by Saturday I could not get up the stairs and I hadn’t gone to the toilet for about 6 hours.  I really needed to but couldn’t.

My husband phoned 999 and an ambulance arrived about 3 hours later.

A catheter was inserted – this was about 10pm.  I was taken to a ward and told I’d be transferred the following morning for an MRI scan.  I was transferred to HopeHospital in Salford, Manchester and had an MRI scan done, lumbar puncture done, and I then moved on to the Acute Neuro Ward.  About an hour later a doctor came to talk to me and took me to a room (in a wheelchair because now I couldn’t even sit by myself).  He told me I had TM and that they were going to be doing all sorts of tests, and that it was rare.

I remember going back to the ward, an IV was started (probably steroids) and other stuff and then I think I “died”, saw the proverbial white light, but what a wonderful thing.  I was sitting on a train with a table between God and myself.  He was holding my hand and talking to me very earnestly.  The light appeared and I was so happy.  Then I woke up: lots of doctors around me, my hubby there.  They had called him and said that they thought I wouldn’t make it.  All this because of meds.  It was quite strange because I saw this train, but I’d never been on a train before and didn’t even know they had tables in them.

Anyway, I spent 6 months there and with the help of the Physios, eventually started sitting, using a banana board, walking with a zimmer frame…  Then on to crutches.

I eventually went back to work after 8 months.  I started with just 2 hours a day and then gradually built up to full time again.  At the beginning of 2010 I cut my hours down drastically because I felt I couldn’t really cope any more.  In September of 2010 I started getting headaches.  After about 4 weeks I went to bed one night and just didn’t wake up.  I lost 4 days.  I was sent home and in October went blind in my one eye.  It happened gradually – at first I just kept rubbing my eye – then I realised I couldn’t see a whole picture, just a portion.  Eventually I was totally blind.  The Opthalmologist diagnosed Optic Neuritis.

I saw Dr Gosall a couple of weeks before Christmas.  He actually told me he thought everything was connected.  Everyone was treating these things separately.  He had me in for testing and I was told that everything had come back fine.

I was just about to return to work in the February of 2011 when I woke up and my legs and bottom felt like marshmallow.  I phoned Dr Gosall and he admitted me straight away and the MRI showed even more damage.  He was confused and went through all my notes from 2006 and found that one of the blood tests had come back as Aquaporin 4 positive!!!!

So, hence my NMO diagnosis.

I now have far more pain and burning than ever before even with meds.  I also see Dr Jacob and Prof Nurmikko at Walton Centre.

I am busy campaigning for this dreaded condition – to raise money, but more importantly, to raise awareness.

xx

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