Meryl
Hi, my name is Meryl,I am 46, and live in Norfolk, I have suspected ms, I have had this condition for four and half years, I have had exhaustive tests, incuding a lumber puncture,(from which I was wheelchair bound for two and half years), I have also had mri scans eye function tests etc, but still they will not confirm diagnosis,at the last appointment my husband and I were told "you can call it what you like ms. Meryl's disease, hypocondria, there is no name or 'label'. We came away devestated, something is going on and we have no answers and no one will give us one. I am on a lot of medication and not sure what it is all for. Am I going mad is it all in my head, am i acutally causing so much pain and grief to my husband and family????? Why do I have all these things going wrong with me when apparently there is no answer, just more tests and procedure to keep me quite, please has any one else out there felt like this. Over a period of ten years or so, I have suffered severe vertigo attacks, migraine attacks, severe fatique, muscle pain, ( i feel inside pain but when pins are put in me i can't feel them?) pins and needles in hands and feet, I do not react when the foot is scraped on the sole?, loss of sensation in various parts of body including my face, loss of sleep, loss of limb usage, when i do walk i feel as if i am walking on a stony beach, my balance is terribe, and my knees give way without warning. I also suffer bladder problems, each time i see my gp he diagnosis depression etc. YES i am getting depressed with all these symptoms and made to feel as if i am attention seeking,( Ican assure you I'm not) at one point the consultant said to me and my mother we are looking at ms, we went to my gp a few weeks later, told him what the consulatant said, he replied "no, he hasn't said that at all" HELP!!!!!!!! can someone help us please. How do we get results and the help we need to deal with all of this. We just need to know and not keep quessing.

Donna, Chorley
My partner is in the process of being diagnosed with what is appearing to be PPMS (they have already ruled out R/RMS). I am very scared for our future - what it will mean to both our's and our daughters lifes. What is most terrifying is that no-one can give you any answers as to how the symptons will hit. I has really helped me today to read all your comments and to see that we are not alone in this.

Mary Dundon from Fairfax Virginia
I control my MS, it doesn't control me!! I was diagnosed 11 years ago, when real treatment just came out on the market. I have been taking Avonex injections once per week, given by myself. After 11 years of dealing with MS, I must say that I think menapause is worse!! Hot flashes at night and not being able to get a good night sleep is tough, but I'm coping by taking natural soy products. I still walk, kayak, garden, cross country ski, and travel frequently. I have repeated bouts with uveitis, which has been a pain in more than just my eyes!!! I have a concerned ophthalmologist, which is helpful. My advise to all, is live the best lives that you are capable of living. If it means taking naps before a family gathering-Do it. If it means you can no longer run a marathon- but you can walk-Do it. If you can no longer read a book a week, listen to books on tape- BUT DO IT!!! Communicate with loved ones. They aren't mind readers!! Let them in on the wonderful mystery of MS!! Don't keep it all to yourselves!!! Never give up!!! With Fond Regards!! Mary

Tony, London
My wife has MS however it is not yet at an advanced stage and she is still able to lead a normal life. However, the difficulty is what lies ahead and not knowing what will happen or when it will happen. We are in our early thirties and are trying for children, but who knows what life may hold for them? i am not able to deal with the situation and therefore try to ignore it; what can be done anyway? I also think that the less we bring it up, the less she thinks about it, and maybe this might in itself delay the onset. Knowing, however, that good decent people around the world are coping with this nightmare has now given me the motivation to confront this head on now, or risk a much harder voyage in the future. Please continue to be strong, if not for yourselves or your loved ones, but for the many strangers out there that need your courage to be guided.

debi from USA
I have read all of your stories and must say they inspire me I was dx'd in 2002 as having RRMS that same year 2 family members passed away and my old tom cat so after 5 physicians and one specialist declared me perfectly healthy despite staggering slurred speech and vomiting daily for over a year my eye dr told me in Sept I had perfect vision by May I went back to him because my vision was so terrible he asked me 3 questions on illness and accident all of which I replied negative he looked in my eyes and said debi im sending you to a neuro I think you may have MS and of course the neuro proved I did I am on rebif shots 3 times a week and I still walk my short term memory is really short hahaha but I have acclimated myself to it and as long as I stay cool I do fairly well it was a long row to hoe to get a dx but I made it and now I take one day at a time we arent promised more than that so if I make it thru one day I feel I have succeeded hugs to all of you hoping for a cure in Indiana USA

José Montoya from Portugal
Well, my wife's been diagnosed MS a year ago, but it seems she's been ill for about ten years, about the time we met, so I can't say it's all very knew to me nor to our daughter who's four years old. With the interferon treatment things seem to be going well enough. We live in a small town and our society is still quite prejudiced and poorly informed about MS, so, on my wife's initiative, we've decided to keep a low-profile about her condition, only letting but her close family to know. Obviously, this adds a further charge of stress to our situation. Our daughter hasn't been asking too much about it, but sometimes I can sense she's puzzled by the fact her mother's been resting for so long and she's tired again. My time of internet has run out, so I just will say thanks for sharing your stories.

Mel Hiscock, Dryden, Ontario
I stumbled, so to speak, onto your site while looking at the Torbay harbour cam (relatives in Loddiswell, you see), and I much appreciate your candid and open expressions. I must know a dozen people in my small town of 8,000 with the same affliction and I don't attend any support group. When I turned 40 in '95, I reviewed my life and felt my progress as an individual was inadequate and slow, so I prayed for the challenges I needed to get my lackadaisical heart in line and become a better person. During an extremely stressful employment episode in '96, I experienced topical numbness on my left side from armpit to ankle. A provisional diagnosis at that time was confirmed as MS in '99. Most people would dismiss that as coincidence, but I have noticed a strong link of negative MS episodes to stress as much as I have positive ones to gratitude. I still work in control systems programming at the local pulp and paper mill, but I do drive in to the office and save a 1 km walk from the parking lot. For many years, I have accepted calls to work in volunteer ministerial positions, and counselling those in far worse situations than mine has been a blessing to me. I have my times of frustration, despair, depression and despondency as one would normally expect. I certainly agree that serious illness can bring about a great internal cleansing. Altough it helps to believe that life's trials have purpose, I have still felt like a blind child placed atop a playground slide. Despite hearing a Father's words of encouragement and believing his open arms will catch me, I still feel twinges of spiritual vertigo as the acceleration begins. I do think the nature of our trials is nowhere near as important as our attitude as we face them. In the end, it's all we have. I don't have reverse gear any more than Steve's scooter does. No time to write more, I need to visit a friend with pneumonia in the hospital and work a little "overtime" at the paper mill, but do pass greetings on to Chris Rogers and his wife Jane, if you know them, please.

Suzanne from Newton Abbot
Emma & Steves story is a powerful one for all of us living with MS. It is important to talk to each other, also to listern to one an other. MS has changed my life completly - not all for the worse (well most of the time anyway!) To the person who wrote in to this page who works as a social worker and is not coping to well with not being able to return to this. Your story is the same as mine - I worked as a social worker for people with mental health problems here in the UK. I spent years helping familys and service users come to terms with people living with a progressive degenerative disease (dementia). Was this "someones" way of arming me with the knowledge so that when MS struck I would be able to draw on that to help me? If that person wants to speak direct to me via email maybe they could contact me via the BBC Emma knows how to contact me.

Dr. Haroun Ghoorahoo
This article is inspiring for those of us who suffer with MS. I have had MS for ten years now and although I qualified as Consultant in Clinivcal Pharmacology, the problems I endountered forced me to consider a post in the pharmaceutical industry, and I now work for GSK. My sons are wonderful and if we are out walking one if them will hold my hand to steady me while I walk with my stick. I am not a quitter and so keep fighting although at 35 the prospect of retirement although financially not freat seems like a good option.

Emma Clements from Paignton
Thank you so much for all your comments, Steve and I have been overwhelmed by the reaction from everyone. Reading other people's stories has been enlightening, informative and sometimes distressing, but it is so important that people know about MS and conditions like it. To Scheherazade from Toronto, I have no medical training and because each persons symptoms of MS are different it would be wrong for me to give you any advice. All I can say is if you think there is something wrong keep pushing and if one doctor won't help ask for a second opinion. Hopefully if you are having an MRI scan you are on the road to diagnosis. In the UK you normally have to have two recorded exacerbations before you are diagnosed with MS so it maybe the doctors are waiting for more signs. Thanks again to everyone who has added comments - with the help of others MS can be beaten - most days anyway!

Brian McKervey N ireland
R/R since 1992, my final / qualifying year. Joined a commercial architecture practice, got married and have two wonderful boys. It's only in recent years that I have accepted my MS ; I have moved from a very agressive commercial practice to a government position, a change which has had a positive affect on my illness. It's good to have a quiet acceptance of my MS...Nobody in the public sector gets fussed about it which is, with reflection, a great relief. Long term worries about seeing my sons ( 16 months and 4 years) out into this world, but short term relief / delight to be as well as I am. Coping year to year is my current project and works well!

Martin Jones Gloucester UK
When reading the comments it is quite obvious that the whole family is involved but when I was dx I kept a great deal to myself. I was looking after my two children after a bitter divorce and didn't want to burden them with more problems. This turned out to be the wrong thing to do! It all came to a head when I was rushed to hospital and they had long chats with the MD's. It became clear that they felt 'shut out' by my lack of communaction regarding MS. We are much closer now and do more together than we ever did before MS came along so, strange as it may seem, I am not to unhappy with my lot. Life is what you make it, MS or no MS, which Emma and Steve prove.

Jackie from Germany
Having been diagnosed with MS 4 years ago,one thing I think I have learnt , is to stay positive.I'm 47 and the main breadwinner and don't have the time or energy to feel sorry for myself, it's very important to avoid stress and to avoid people who treat you like an invalid.I'm about to start an Interferon treatment and hope that progress in research and medicine will help us all.

Brenda McLean from Nova Scotia
Your story was very upbeat considering the seriousness of the illness. I received a confirmed diagnosis of MS in 2001 after numerous tests. The most difficult part of this illness is the fatique and cognitive difficulties that I have experienced. I currently am on longterm disability from work and trully don't believe that I will be able to return this time. It has been very difficult to deal with because ,physically, I look very well and emotionally I need to find something. I have worked all my life and feel that my world is at a standstill. Maybe someone can offer some ideas of how they have dealt with not working. I am a social worker and have had alot of clients with serious illnesses. As well I have had alot of elderly clients and it is all these people who have taught me so much about life and have assisted me in working with my own illness. I guess I am just at a standstill right now as to how to proceed in my life to make it more meaningful .

Laurence Robb - Saltford
I was just checking my eyesight in order to apply for a provisional driving licence when my double vision started 28 years ago. Since then it has been a sharp learnig curve. In those days neurologists had a collection of needles pinned at the reverse of their lapel. The one I saw, after the ophtalmologist had decided that it was abigger problem than he could deal with, was a the top of his profession judging by the size and the colour range of the pin heads. I decided to help him and tell him that there was nothing wrong with my arms...I wished...I have since not always been that nice. The GP who stabbed the injection needle at a right angle or eaven the neurologist who ridiculed my visiting the Royal Homeaopathic Hospital next door. Well, I made it a worthwhile trip to go to London...I have already mentioned that in the International federation of MS Society's profiles of PwMS in December 2002. I still help the MS Research Unit in Bristol and I maintain a website for them at digitalbristol. As you see after diagnosis life changes BUT carries on. I always think that I am doing what I do in stipe! I cannot help the people suposedly close to me who cannot cope with my having MS. My mother still calls it a health problem not multiple sclerosis so I carry on in spite! My husband and his family are far more supportive Adopt, adapt and carry on in spite of what they tell you.

Judy James, Queensland Australia
As person with R/R MS,and editor of our local MS nwesletter, I get research info from all over the globe, via the Internet. With the increasing info on the benefits of Vit. D. in helping squash MS, I went on a personal 12 month trial with my doctor supervising.(university of Wisconsin is now doing a human trial) - I improved in that time with no side effects, using Cod Liver Oil or Odourless Fish Oil, and now have been on these for 3 years. I still get relapses now and then but they are of lesser duration and quite mild, and we seem to have slowed the MS right down. My general health is much improved and though I am not stronger, I am still very well indeed. I am not on any other medication whatsoever.

Stephen Knapp from Boca Raton, FL
Coping With Multiple Sclerosis – A Family Affair – How a Family of Four Has Learned To Adjust To a Father’s Disability My wife, Janis, and I have been married for 32 years. We had two children (one girl, one boy), raised them, and put them through college. Then we decided to have two more children and now are raising our two girls (Janna, 9, Alexandria,11). My wife works as a teacher, I am a manager for a company in South Florida. Our plans have been to get the second pair through college and then retire. A few years ago I started having migraine headaches. I finally went to see a neurologist who ordered an MRI. As you can imagine, it was quite a blow when I was diagnosed at age 53 with Multiple Sclerosis. When we heard the news we were not sure how to take it. I had been healthy all my life and did not seem severely affected at first. My only symptoms were migraine headaches and an occasional quick temper. When I walked my gait was slightly affected, but it was imperceptible to most people. At that time it did not appear that my family would have much difficulty adjusting. But, as I worsened, that viewpoint changed. I began researching MS, reading books, articles, and information on the internet. I was consumed with learning what it was all about, and what to expect. The more I read the more I realized that MS affects each person differently, and I had no way of predicting what was to come. My family agreed to learn with me, so we went to seminars, visited and observed others with MS at meetings, and then we were invited to a very rewarding retreat attended by only MS patients, their families and a trained staff. We spent two days talking to others who had progressed in their disabilities to stages far beyond where I was. It was a real eye opener for all of us. Some were in wheel chairs, some used walkers, and a few had motorized scooters. Our children played and talked with other children who had a parent with MS. My wife sat with other caregivers and listened to their experiences and offered effective coping skills. I heard people with MS tell their stories about how it had affected their lives, their careers, and their marriages. The weekend’s experience sent a clear message to me that things were going to change radically, and that I was going to need a lot of help from my family. In addition to all of us becoming more knowledgeable about MS, I wanted them all to be involved with me in some of the processes that I had to deal with. For example, I have to have an MS prescription injection every other day. When the nurse came to teach me how to do it, all family members were present. There are many detailed steps involved in doing it properly. We learned together how to measure and mix the medication, how to prepare the injection site with ice, how and where to give the shot and how to keep track of all the different places on the body where I get injected by recording a code on the calendar and rotating the sites. In the next few months each of my family members performed parts of that process. Everyone has participated in giving me a shot numerous times. I can give it to myself, but their involvement is important to me. They feel like they are helping me and we are doing something together. I want that sense of sharing things together as much as possible. That is what being a family is all about. As the months moved forward it became apparent that the hot, humid South Florida weather made me weak, and gave me terrible headaches. I began to try to find ways to avoid the heat. I mow my lawn weekly, so I started mowing either very early in the morning, or after the sun had set. My wife and family pitched in with the trimming and edging. As my legs have become progressively weaker, my family has had to take on more of the duties that I used to do. I don’t take the trash out any more. I don’t get things in and out of the garage. I don’t help around the house with chores that I once did regularly. This Christmas I did very little in helping to de

Jerzy Grzeszczuk from Poland
About me and multiple sclerosis (MS) please read my home page (in English and in Polish): www.haptens.republika.pl The cause of MS is known!!! Best wishes, Jerzy Grzeszczuk

Ed Sherlock Pencader
I've had MS for the last 13 years and I can confirm that it is a MonSter! I am 49 and single father to two now grown up boys. I cannot walk or cycle as easily as I could and whats worse? Not being able to sit still comfortably. I am lucky so far my eyes haven't been affected and my facial muscles are under control. I believe that exercise and fresh air have helped me to live with the condition although it is gradually getting worse. Its so difficult to explain what is the matter, why I keep falling over etc, a rough analogy would be for a normal person to strap a breeze block to each foot and a bungy cord to their back. Like this progress is wild and unpredictable but I must weigh up every step I take. It gets you down after a while.

Alix from London
It was helpful to read Emma's comments on how people look at her husband and comment on how well he looks. For the member of my family who has MS this can be an intensely frustrating. She has to put up with endless intrusive remarks from people who think that just because she looks well, she must be feeling well too. I sometimes wish that relapsing remitting MS came with a metaphorical plaster cast so that people would stop assuming that a person who looks well is. I'd like it on record, please, that someone who has stopped work becaue they are ill does not have endless time on their hands to kick back and enjoy life, and start "projects" to keep them "stimulated". They do not need their time filling. They need their time for the endless round of medical appointments, and to take into account the enormous effort and amount of time it takes to do the things healthy adults take for granted - like getting out of bed in the morning, or walking to the shops for a newspaper,...or dealing with well-meaning but dense friends.

Michael Murray from Melbourne Australia
Thanks so much for you telling the tale of your husband Steve's life, and your own too Emma. I was diagnosed with R/R MS in '99, and was able to recognise prior symptoms too. Your support and posiitivity is marvellous. Keep it up and fight on. Good luck for the future also. I'm more active than ever by the way, and remain as ppositive as I think I could possibly be (hiding any worries etc well hitherto maybe) and so far I've been pretty lucky. Unfortunately it caused all sorts of additional stress to an already stressful relationship with my wife, and hence cost us our union (very unfortunately). Your support will aid enormously Emma. You're a strong woman..........congrats to you, and again, all the best Steve. Cheers..Michael

David from Canada, originally Manchester
I have what is called primary progressive MS. I was diagnosed two & a half years ago, two weeks before 50th. When diagnosed I went down hill pretty quick, until I changed my atitude on life where I was going, since that time I have been feeling so much better. Head space is very important, at least it was for me. I think I'm doing better than I was just before diagnoses, even with all the other junk that comes with this lousy desease. I know all the sports I use to do is over, football, squash, but at least I can still ride a bike (three wheeler recumbent} so for all you MS,rs don't give up, keep fighting this monster.

Scheherazade from Toronto
Thank you so much for sharing your experience. I fear I have MS as I seem to have all the symptoms but despite so many visits to the doctors they are still unsure of what my problem is. My left eye is droopy and I feel sleepy all the time. I have been forgetting names, have been unable to access words forgetting short term incidents. I have been getting excruciating bouts of pain on my left arm shoulder and side for a period of ten days plus at times. Am fatigued and unable to cope with my work.Suffer from prelonged bouts of constipation. My voice has changed. I cough if I talk too long. For some years now when over worked or unwell my voice just goes for weeks. I would be gratful if you could answer a few of my questions that have been bothering me: a.)how did the eye problem begin in your husband's case- was it with a drowsiness affect too or was it just vision problem. Has he lost vision in one eye or partially. b.) Was the brain scan normal or did that show white blood cells in it. c.)How was the illness finally diagnosed. d.) Did he feel sleepy and drowsy all the time? I ask because of am tired of feeling as if I am a psychological case when my physical symptoms are so real. I hope it is something other than MS but if it is I would like to know sooner than later. My physician has remained unsympatheric to my cause and has said that perhapas I need to go to a behavioural therapist. It is when I went into emergency at the hospital that I was taken seriously and my tests are now being done. Sincerely, Scheherazade

Charlene Lemieux from Michigan, USA
I found Emma and Steve's story to be very encouraging; I'm 62 and about to marry a man 64 with the same type of MS Steve has and Art has had his since the age of 36. I just thank God every day that he has this form of it and not the progressive. The worst of it was years ago and he's left only with no short term memory and a problem with "thinking" things out. I wish Emma and Steve blessings and I, too, am learning patience, which I'm very short of, Emma!

jackie west sussex
my husband had his first symptoms almost 11 years ago and was finally diagnosed with ms 5 1/2 years ago like emma i tend not to face things untill they happen but the implications of this disease have rather crept up on me. My husband`s could be worse he suffers with fatique,weak legs and poor balance but we have tried to keep positive he used to be a 9 handicap golfer which needless to say he`s not able to do now but instead he has taken up indoor bowls he can`t walk long distances but despite his poor balance can ride a bike so we do that together.lately he has playing snooker too.we`ve learn`t to alter our lives in a positive way he has also taken up oil painting.Really the whole experience has brought us closer together and I know what ever happens in the future i can face it with him.

Jane Exmouth
I was concerned to read anonymous's comments. MS is not a terminal disease in itself - although it can weaken the body, making it more vulnerable to other infections. I have had MS myself for 27 years, so I am aware of this, but it could be misleading to anyone else who has MS.

anonymous ,please
My husband died ten years ago from M.S. His mother had died three years ealier from the same complaint, and from the first diagnoses my husband withdrew into himself, but made sure he did what he wanted to. He became wheelchair bound within five years with the degenerative form and refused to talk about his feelings or mine. I nursed him until the last nine months of his twenty year illness, but eventually my sanity was at risk, and I asked my Dr. to move him to a nursing home. My husband, showed no interest in this development, he was always bitter about his MS. Keep talking and touching, Emma this will be the best medicine of all.

Katie from Lindenhurst
Hi, my name is Katie and I am sixteen years old and my father has MS.Reading these stories help me to understand that were not alone.It wasn't until recently that I opened my eyes and realized the severity of MS and the horrible effects it was having on my father, his four children and his wife.All my life to me my dad was a hero, and I was his baby girl.Sometimes I wish I could go back to that innocence, that pureness of not knowing.But Im smart enough to realize I can't. I know I have to learn to deal with the effects of MS and to live with them.But knowing that were not alone in this, that are other people who go through this too makes it a little easier to get through those long days.It's hard enough to be a teenager,but when I see my dad laying in bed not able to move I can't help but feel angry.Why him? He didn't deserve this! But then I realize noone else who has MS deserved it either.