Colleen’s Story

One 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. She sent me home with some Amitriptyline 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 tablets. 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 made 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 six hours. I really needed to but couldn’t.

My husband phoned 999 and an ambulance arrived about three 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 Hope Hospital in Salford, Manchester, and I had an MRI scan and a lumbar puncture and was 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”. I 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 six months there and with the help of the Physios, eventually started sitting, using a banana board, walking with a Zimmer frame and then on to crutches.

I eventually went back to work after eight months. I started with just two 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 that year I started getting headaches. After about four weeks I went to bed one night and just didn’t wake up. I lost four 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 ophthalmologist diagnosed optic neuritis.

I saw Dr Gosal, a neurologist, 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 Gosal and he admitted me straight away and an 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 NMOSD diagnosis.
I now have far more pain and burning than ever before even with meds. I also see Dr Jacob and Prof Nurmikko at The Walton Centre.

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

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