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Stories from this county…

Somerset

Trish’s Story (Founder of NMO-UK Research)

trishIt is always important to understand how sufferers feel and we must always keep that uppermost in our minds, but I would like to tell my story as a Mother of a sufferer.

It all started on Christmas Day 2004 with a supposed stomach bug, Kirsty was 14 years old, I booked an appointment at our family doctors and a stomach bug was diagnosed. Although we followed our doctors instructions things did not improve so it was back to the Doctors, Kirsty’s blood was tested but nothing showed up. At this point Kirsty was starting to get tired very easily and falling asleep in school, so once again it was back to the Doctors.  I was told to keep her off school and let her sleep it off; it was the Virus taking its toll.

On the 31st March 2004 I picked her from school, we were travelling behind a bus when Kirsty said she could not read the number plate, it was all blurred and double. That was it I drove straight to Alder Hey Children’s hospital. By the time we got there parts of her body had become numb and her vision was deteriorating, to me it looked like she had suffered a stroke. A scan, that night showed some inflammation on the Brain.  I was told they didn’t know what it was and it needed more investigating.  Kirsty was put on Steroids. It was horrible to see my baby suffering and feeling so helpless, after all I’m a mum and we make our children feel better.

They following Morning we were sitting at her bed when 5 Doctors approached and asked if they could have a private chat, I knew the news was not good.  They told me and her Dad that they thought it was a Brain Tumour; I went to bits this couldn’t be happening. They thought Kirsty should know but I insisted they were not telling her after all how do you tell your baby that news?  I couldn’t approach her bed without the tears flowing down my face and did not want her to see the concern in my face.  Her Dad knew he had to be the stronger and went straight to her.  When I composed myself and approached her she asked “what’s wrong mum why have you been crying am I going to die”, it was heart breaking.  I am so glad we did not tell her what their thoughts were as the following day once again the doctors approached, this time it was good news it was not a tumour but still they were not sure what it was.

After numerous tests including a Lumbar Puncture, they diagnosed ADEM (Acute Disseminated Encephalomyelitis) I must admit we were all pleased it was not a Tumour.  I felt that we could deal with anything now.  Me, her Dad and older sister Emma spent weeks in hospital taking turns to stay overnight with her.  I have to say that for my family, as we lived local to the hospital, we coped with the obvious issues of fitting in work and day to day life but for those who live further afield I can only imagine the distress and hardship suffered by them. This is yet another reason, in a long list, why this charity and support campaign is necessary.

The Steroids eventually took affect and after several weeks in Hospital, we were finally discharged.

Then the following year more or less to the exact date, we were back at Alder Hey with a second episode.  I’m a need to know person and I knew you could not get ADEM twice, I also knew that it was very similar to MS. The new Diagnosis was MS.

Kirsty was nearly 16 now and in the grand scheme of things, technically an adult so was transferred for treatment at the Walton Centre.  Dr Boggild was Kirsty’s MS Neurologist, along with the MS Nurses, Kerry Mutch being one of them.  So treatment was started.  Rebif was the first drug but didn’t work. Next it was Mitox which kept Kirsty symptom free for 2 years.  At the end of that, ever so brief period of calm there was yet another relapse.  This time capaxone was once again prescribed, it didn’t work. Then we got the supposed Miracle Drug Tysabri, Kirsty was still receiving Tysabri when yet another relapse, But this time within 24 hours she lost the sight in one eye and the next day both eyes were affected.  I would like to mention at this point  that Kerry her MS Nurse (who we had grew close to) had informed us a couple of months prior that she was leaving us and was going to work within NMO.  Little did we all know that we would be, shortly, following her?  This was when we met Anu Jacobs the NMO specialist and he explained what they thought was happening this time.  It was all knew to me, I had never heard of this Disease. Subsequent treatments showed that prescribed steroids had hardly any effect so next it was a Plasma Exchange. It was not a nice procedure but thank God it worked and Kirsty regained her sight after 8 weeks. It was a horrible time for all of us.  Kirsty was discharged a few weeks before her 21st Birthday and was able to go away to the Dominican Republic with her boyfriend to celebrate it.

So now the new Diagnosis was NMO.  We were told also that the MS drugs had made the NMO worse.  I searched the Web to find out more on this cruel Disease and must admit I came across some scary sites.  I then came across a Facebook group which was a worldwide NMO group.  I found this to be a great way of communicating with people who understood, gave support and knowledge. This prompted me to start up a UK Facebook group, to see how many people had been diagnosed in the UK. We now have 125 members.

Right from the start Kirsty has not wanted to read or know about her illness, after all she was only 14 when it all began and I understand her reasons.  Kirsty is 24 this year and living a stable life with her partner.

NMO is very rare disease hence not a lot of people, even in the Medical Sector, know of it.  We need more Awareness and funds to research in to this cruel disease.  This was the driving force and the main reason why this Charity has been a dream of mine for many years.  It is overwhelming to finally be here…..

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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