More MS news articles for May 2002

I Remember the day my body started acting weirdly

Mary Peck was fit healthy and just 26 when a slight tingling in her foot heralded a nightmare. Here she tells Susannah Osbourne how she has coped after being diagnosed with multiple sclerosis.

[Contact details for Campath-1H trials at the bottom of the article but before my text.]

http://www.dailymail.co.uk/

28 April 2002
You Magazine

Two and a half years ago, I was a normal 26-year-old in perfect health: being ill happened when you got old. I was atypical student, sharing a house and living a life of late nights and bleary-eyed mornings. I was happy healthy. Normal.

I come from a medical family: my mum's an anaestetist, my dad's a dentist and my sister is a doctor. But although I had constant pins and needles, it took me weeks to get around to seeing my GP. He didn't seem bothered. 'Just go home and forget about it' were his words. So I did. I had plenty to concentrate on: I had one year left of my training contract as a medical negligence lawyer, and I knew that, after three years at university and two at law school, I was in the final straight.

My pins and needles continued for months, but my GP didn't seem alarmed. When my vision became a little blurred the following summer, though, he responded immediately. He sent me to an ophthalmologist who referred me to a neurologist as an emergency case. He barraged me with tests: noting reflexes and sticking pins in me. He didn't give me a full diagnosis, but he said my brain was swollen, and it was affecting my sight. Steroids, he said, would sort it out. Meanwhile, he said, I'd need an MRI - a brain scan.

When you've always been healthy and happy, being slotted into an electronic box to be tested is not nice. I will never forget the sights, the sounds, the smells. The room was empty except for a huge machine and me. It was cold and smelt of disinfectant. When I lay on the trolley and the scanner closed over me, time seemed to stop. I was claustrophobic, cold and scared.

I hate hospitals, but I'd gone alone because I had bravado, it didn't last. The results were almost immediate. And serious. In a cold, bare room, a registrar I'd never met before told me that I had scar tissue on my brain, and that it could be multiple sclerosis (MS). If it was, my immune system would be devouring the protective sheath around my nerves, meaning that messages couldn't get through - hence the pins and needles. The loss of vision could be optic neuritis, a result of optic nerve swelling.

I was devastated. I've never cried so much, so hysterically or for so long. I felt as if someone had punched my in the stomach. I was being robbed of everything: a future, opportunities, a normal life. In despair, I phoned my dad. 'It's OK,' he said, 'it's not the end of the world. We'll support you.' I knew he was right; I had to get a grip. First I'd need more tests to check what was wrong. That meant a lumbar puncture - an unbelievably painful procedure where fluid is taken from your spine with a syringe the length of a knitting needle - and an agonising three week wait.

They gave me the news when I was sitting in the consultant's office with my dad: I had MS. I was gutted. Standing in the street afterwards; I cried and cried. I was just a normal girl who ate chocolate, drank beer, partied and tried (occasionally) to keep fit. This seemed so unfair.

My family had already guessed and, being medical people, managed to keep calm. I didn't. I wailed and shouted. I was so angry I wanted to lash out, to hurt someone as badly as I'd been hurt. My friends were brilliantly practical and supportive. Alice, a physiotherapist, found support groups and information on the net.

After a couple of weeks, I tried to get on with my life. By September 2000, I'd moved to Maidstone, Kent, and taken up my first job as a medical negligence lawyer. I threw myself into my work and social life. But one day in November, walking to work, I realised I couldn't see the cars; they were just blurred shapes. Nor could I read the signs or see where the kerb was. I blinked, trying to make the problem go away. Was I going blind?

I was terrified. I knew MS could have all sorts of horrific effects - that I could lose my mobility, and that in the end I could die. But I never thought I'd lose my sight. Panicking and stumbling, I found my way home and called my mum, then my new GP, then the consultant. I was prescribed steroids again.

I realised how much I relied on my sight. Moving to a flat in Kent had seemed a good idea when I started my job, but now that I was ill, I was stuck inside on my own all day. I couldn't work or visit my friends because I couldn't read the the signs at stations and couldn't cross roads in case I got run over. I was terrified of entering a pub because I couldn't find anyone. Even shopping was hideous - I'd go to Topshop and see blurs, not clothes.

I felt like an old woman. I spent my days watching a blurry TV, listening to music, trying to read. My body was failing: I ached, my left eye drooped and felt bruised. I couldn't walk straight; so people thought I was permanently drunk. I'd knock into things. I was bruised all over.

By January last year, I couldn't even climb the stairs. I called my Dad, who drove over to fetch me. It was so strange being collected by him and going back to the house I grew up in. It was like going back in time. I'd left home in Suffolk for university at 18, set for life as an independent adult. Now I needed looking after all the time. While my body aged overnight, I was having to live like a child.

By February, I was really down - it was cold and grey, and I felt terrible. Mum and Dad took me to Tenerife. I loved the sun, and needed to get away from it all. Despite everything, my body still looked good. I was feeling better and more positive, dreaming of living a normal life.

It didn't last. After a few hours by the pool, I couldn't feel my legs. I was powerless. I panicked and I cried out for Dad, who ran over and carried me to my room. The rest of the week we hardly moved from the hotel. As I was wheeled out at Stanstead airport, I felt lower than ever.

Back at home, things got worse. I still couldn't stand in the shower, so Mum had to wash me. When I tried to move my feet, they shook uncontrollably. I was always exhausted. I was admitted to hospital for a course of intravenous steroids but I didn't respond. I just got worse and worse. I couldn't do anything. I was immobile.

When I had been diagnosed, the consultant said he hoped I had benign MS and that I'd be able to lead a normal life. But I didn't, I was almost crippled, walking with two sticks or using a wheelchair. I was coming to terms with the fact that I'd probably never be a mother, a lover - just an MS patient, financially, physically and emotionally dependent on my parents: an invalid. I felt my life was over.

But deep inside, I knew I couldn't give up. I lay in bed trying to read. It wasn't easy as I couldn't focus, but I kept going, reading about the effects of MS, about people who'd overcome it and, most importantly for me, lawyers who had worked in spite of it. I was determined to get better.

Then, last June, my consultant told me about a research project at the Cambridge Centre for Brain Repair, where they were testing a drug, Campath-1H, on MS sufferers. It was a risk, trying out something new, but what did I have to lose? At the centre, they explained that the drug would be injected through a drip for five days for up to four hours a day. If the treatment worked, the cells that were eating away at my nerves would be killed. The results might be temporary - or permanent, if I was lucky.

The process was horrible, but the stay changed my life. The nurse, Jackie, was a fantastic life counsellor. After five days, I was a new woman: no stick, no wobbly walking, no blurry vision. It was miraculous.

Within three months, I had a life again. There's a 90 per cent chance I won't relapse if I go back for a top-up every 18 months. I can control my shaking, and the wheelchair is no longer part of my life. I'm careful to avoid infection as the drug weakens my immune system, but it's a small price to pay.

Recently, I went to London by train to a barbecue with my friends. It was the first time I'd been able to go out with them for a year, and it was like coming home. They were amazed at my transformation: instead of a 'cripple' to whom they brought cards and flowers, here I was, walking unaided, talking and joking like I used to. I hadn't even taken my stick - I had forgotten it.

My life is far from perfect, but now there's hope. I can think of having a social life again, maybe even a boyfriend. I'm regaining my sense of self, and my sense of humour.

I swim twice a week, although I never thought I'd exercise again. the best thing is that when I go to sleep I don't have to worry whether I'll be able to stand up or not tomorrow, because I know I will.

Something else has happened that I never thought would: next week I have a job interview. I've never wanted anything so badly. I hope to be living alone again within a year, enjoying to normal life of a 20-something. This time it will be at walking pace, not running. But even that's OK.

MS the facts

What is multiple sclerosis?

It's a permanent, progressive disabling disease that occurs when the protective coating around the nerves in the brain and spinal cord is attacked by the immune system. MS is the most common neurological disorder among young adults, diagnosed usually in people aged between 20 and 45. There are 85,000 sufferers in the UK; the chance of getting the disease is 50 per cent higher in women than men.

What are the symptoms?

They vary enormously from patient to patient, and may come and go. Attacks can happen over days or weeks, and may leave the sufferer handicapped. Blurred vision is a common symptom.

What are the causes?

MS may be caused by a genetic trigger plus a combination of an environmental trigger, such as a virus, and a defect in the immune system. MS can occur in more than one member of a family, but is not considered hereditary.

Conventional treatment

Steroids can ease inflammation, and Beta Interferon can boost the immune system, but both can have side effects. Physiotherapy sessions can help joint mobility.

The new treatment

Campath-1H destroys the nerve damaging cells in MS patients. Addenbrooke's Hospital in Cambridge, which has treated 50 patients, is the only hospital to test it. While the drug does not offer a cure, results so far indicate that patients treated in the early stages of the disease respond well. The hospital is recruiting for further trials. For details, write to:

Dr Alasdair Coles,
Department of Neurology,
Adenbrooke's Hospital,
Hills Road,
Cambridge CB2 2QQ;

e-mail: ajc1020@medschl.cam.ac.uk

Copyright 2002, Associated New Media

[Campath-1H (alemtuzumab) is a monoclonal antibody treatment that is also being tested with leukaemia (an unrelated disease to MS).

Here are two articles from 1999 on the drug:
http://www.mult-sclerosis.org/news/Sep1999/Campath1H.html
http://www.mult-sclerosis.org/news/May1999/LeukaemiaandMS.html

Here is an article from September 2001 that explains what monoclonal antibodies are:
http://www.mult-sclerosis.org/news/Sep2001/MonoclonalAntibodies.html

Here are some Medline articles that may be useful:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10568572&dopt=Abstract
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10489036&dopt=Abstract
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10482259&dopt=Abstract
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9345418&dopt=Abstract

This is Millennium Pharmaceuticals Web site:
http://www.mlnm.com/news/1999/10-14--5.html

I apologise for the age of these articles. There doesn't seem to be many papers published about Campath and MS in the last couple of years.]