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Jeremy | 02/04/2007 14:20:00

My diagnosis story http://knowms.com/2006/08/22/diagnosis.html

Jeremy | 02/04/2007 14:21:00

My experience with Avonex http://knowms.com/2006/08/22/medication.html

Bernie | 03/04/2007 01:06:00

In February of 1981 I severely sprained my ankle. I continued limping for several years. In 1986 after tightness in my right calf and spacticity saw a neurologist who had me get a spinal tap that showed MS. I did beta seron 6 months in 1991 avonex in 1998 novantrone 2001 for 2 years. I saw no improvement was slated tor tysabri in 2005 than the withdrawl. My Dr. said I would still be a good candidate and it would be back. In June 2007 he told me he was too dangerous NO, I got an appointment with Dr. Tornatore asst. Prof. neurology Georgetown Univ. He put me on Tysabri. 2 Doses so far no side effects very minimum improvement but over 23 years I have had a downward spiral regression. I have no fear of PPML

George k | 04/04/2007 12:13:00

My wife has MS and used to see a neurologist annually.However because of New Labour NHS reforms in the UK and their plans to cut down on waiting lists,she doesnt see anyone anymore.Last time was 4 years ago when she was told her local GP would be her future contact as there was nothing a Neurologist could do .

SASSY SCOTT | 04/04/2007 13:05:00

WOW HAVING READ THESE STORIES MAKES ME FEEL SO PRIVALIGED AND LUCKY LUCKY LUCKY!! WAS INA COMA IN 1990 SO CALLED XPERTS GAVE ME 2 DAYS TO LIVE AND SAID I WOULD NEVER COME OUT OF THE COMA AND EVEN IF I DID WOULD BE " A TOTAL VEGETABLE"[THERE WORDS NOT MINE AND HERE I AM 5 RELAPSES LATER WITH 2 DEGREES UNDER MY BELT ABLE TO LIVE AS NEAR NORMAL LIFE AS NORMAL CAN BE! I WAS FINALLY DIAGNOSED IN 1992 BY PROFESSOR WILES UHW CARDIFF! AND 17 YEARS LATER AM STILL NOT ON ANY MEDICATION!! AS I SAY BL***Y LUCKY OR WHAT? MY PERSONALITY HAS COMPLETELY CHANGED I RUN SEVERAL OF MY OWN BUSSINESS' FROM HOME ONE OF WHICH IS DISABILITYADVICESHOP.COM WHERE PEOPLE OF ALL DISABILITIES NOT JUST MS CAN COME AND JUST CHAT ABOUT THEIR HOPES,FEARS AND PROBLEMS DEALING WITH WHICHEVER DISABILITY HAS INVADED THEIR LIVES.WE OFFER THE LOWEST PRICES FOR ALL DISABILITY AIDS FREE POST AND PACKING FOR THE BARGAIN PRICE OF BEING A MEMBER JUST 20 BSP'S PER YEAR ON E CALL 24/7.WE HAVE COUNSELLORS,LIFE STYLE GURUS AGAIN ON E-CALL 24/7 SO NO ONE NEEDS TO COPE ALONE.WE HAVE A STAFF OF ALL AGES ALL DISABILITIES! WE DO NOT JUDGE NOR DISCRIMINATE WE SIMPLY LISTEN!! PLEASE GET IN TOUCH @ disibilityadviceshop.com YOU'LL WONDER WHY YOU HAVEN'T VISITED US BEFORE!! ON THE SUBJECT OF ACCESS TO HEALTHCARE I AM ASSIGNED TO MY OWN PERSONAL MS NURSE AS ARE MOST MSEES IN SOUTH WALES AND I BELONG TO A GROUP OF MS AFFECTED GALS WHO GO TWICE A WEEK TO OUR LOCAL HOSPITAL FOR PHYSIO SESSIONS AND OUR XCELLENT PHYSIO TEAM ARE ON THE SPOT SHOULD WE NEED THEIR ADVICE.I ALSO WALK TWICE A WEEK WITH A GROUP OF WALKERS AND MY HUSBAND AND WHILST AT FIRST I FEARED IT WOULD LAY ME FLAT ON MY BACK IT HAS HAD THE OPPOSITE EFFECT AND NOW MY HUSBAND SAYS IT'S STOPPING ME THAT'S THE PROBLEM.I AMONGST OTHER FAMOUS PEOPLE HAPPEN TO HAVE MET A GROUP FROM NICE WHO WERE ALL RETIRED AND I WAS TOLD EACH MEMBER OF NICE JUST GIVES THEIR OPINION ON SPECIFIC DRUG TREATMENT[S] AND THE RESULTS ARE THEN TOTALLED UP AND GIVEN A SCORE RATING??? THINK WE'S ALL STAND A BETTER CHANCE OF WINNING THE LOTTERY!! IS THIS REALLY THE BEST A COUNTRY THAT WAS ONCE REGARDED AS GREAT CAN OFFER?? AT LEAST THERE ARE LOCAL ELECTIONS COMING UP WE ALL HAVE THE POWER TO GET THE CURRENT LOSERS OUT !! WELL IN WALES ANYWAYGOOD LUCK AND TAKE CARE OF YOURSELVES!!LUV SASSYXX

cool h | 04/04/2007 13:20:00

Diagnosed in Jan 2006. Prior to this I'd had years of investigations for pains in arms and hands, and then very strange and scary headaches. The headaches resulted in a diagnosis of Arnold Chiari Malformation, for which I had surgery in Jun 05. This left me headache-free but falling, forgetful and even clumsier. Following a fall in which I broke my kneecap, I spent 5 weeks as an inpatient, having tests which resulted in an MS diagnosis. My local MS service is great. I see my consultant every 6 months at present, and can contact my nurse whenever the need arises. I'm glad to feel that I get patient-centred care, but I recognise that this is not the case for everyone living with MS. Currently taking amitriptyline and gabapentin. Have had to stop working as concentration span is tiny, fatigue is huge, energy levels very variable. Live alone and worry about cleaning, gardening, managing stairs, driving etc. Can't carry anything for very long. Increasing sensory disturbance in legs and arms - dysesthesia and parasthesia, I think they're called. Looming cognitive malfunction is scary. MS has no redeeming features. Realise I'm lucky to have good friends and enough determination that I can lead an active and interesting life.

Jayne | 04/04/2007 13:41:00

My first episode was in 1994. Not diagnosed with MS until 1998. I was working but had to give up as I get too tired to continue. I take medication for my dizzibness and pains. I see a sapecialist at the hospital once a year and the M S Nurse twice a year. My husband and son are my carers. I could not cope without them due to being in a wheelchair.

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tampi | 04/04/2007 14:08:00

much as i appreciate what the government is doing with their treatment here in the UK, more education on handling and treating the diease should be given to expatriate employees who go back to their countries after working here(they don't need to be pensioned, some are still young) and after the strain and stress of the kind of work they were doing here are diagnosed with the disease.

alison | 04/04/2007 14:32:00

I was diagnosed after I had an MRI scan early 2004. I had suspected that I had MS and I also developed one sided hearing loss so I saw an ENT specialist. They found a benign tumour and MS on MRI at the same time. My balance is appauling and I get alot of nerve pain in addition to increased sensory nerve loss in lower limbs. I do not see any specialist on a regular basis or do I take any regular medication. I recently requested a re-referral to a nuerologist. I had to give up work in 2002 due to chronic tiredness but try to remain as active and positive as possible with support from my husband and friends.

dentonwend | 04/04/2007 15:04:00

I was diagnosed with MS in 1986 after a back injury. I had a lumber puncture as part of investigation for the back pain and the doctors were surprised to find I had MS. It didnt surprise me as I had been ill for years with various problems which were easy to explain once I knew I had MS. I had been treated as a malingerer and lazy and the diagnosis was a relief rather than a shock. I was offered steroids and sunflower oil to drink, which I refused.I have had treatment with steroids on several occasions and found them to work with varying degrees. I have never been offered Beta feron or any of the other new drugs. I was medically retired in 1988 and have learnt to manage my ms by resting in the afternoons and trying not to get too tired. I have heavy legs and arms and can hold about 10kgs but only for a few seconds. I have eaten the foods recommended by ARMS, an ms charity that folded in the 1990s. I eat fish at least 4 times a week and have a diet low in other animal fats. I had a heart attack in 2004 and I am convinced that if I hadnt been on the diet for ms I probably wouldnt have survived it. I will stay on the diet for the rest of my life as I feel that it has kept me mobile and helped stop me becoming wheelchair bound.. I take starflower oil capsules daily and have done for 20 years and think that they have helped. I take various other medicines, some for heart disease and some for bladder control and anti depressants as depression has followed me for most of my life. I dont know if I should attribute it to ms, but I feel that I will be on the medications probably for the rest of my life. I suffer from fatigue and sleep problems, sometimes too much sleep, sometimes lack of sleep. I try to swim when I have the energy but it isnt often that I have. I also have cognative problems like not recognising faces of people I havent seen for a while and forgetting the way to places I have known for years. I find this very irritating and have to write down directions to places like the hospital or friends homes. I last saw a doctor for my ms in December and it was the first time I have seen this particular doctor. He refused to believe the name of the doctor who diagnosed me and contradicted everything I said about my symptoms. I felt that he was treating me as if I had made the diagnosis up and has since sent me for an mri scan. I hope he finds the proof he needs as he isnt much help to me treating me as he did. I am due to see him again in June and I will take along copies of my notes from The National Hospital where I was diagnosed that confirm the name of the doctor who diagnosed my as having ms. It is very sad that I should still be treated as a malingerer after 21 years with the disease.

Sandra | 04/04/2007 15:24:00

I was diagnosed in 1979 and had been married only 6 months. I went to my GP as I was having trouble with my vision my perception of where things should be was way off and I often missed the table when putting htings on it, I though they wer right on and they were actually half way off and often fell on the floor. Whe I went in to my GPs surgery it was quite a walk to the desk to sit down and her first words were, why haven't you been to see me sooner, I can see that you have a problem. I was sent straight to our local hospital and when I saw the consultant was told I was an hysterical person and there was nothing wrong with me!! When my GP had received a letter from the consultant I went back to see her and she said what on earth did you do when youn saw the consultant? as the letter was very derogatory. Not bebing happy as she new I was not one to complain and certainly not an hysterical character she immediately wrote to the National Hospital for Nervous Diseases and I was seen a week later. After spending nearly all day, there being seen by various Doctors I was told there and then that I had MS as the damage to the eyes was obvious, I was then admitted and treated with ACTH and steroids which gave much improvement. I have had this treatment twice and have been lucky to stay reasonably well for a long time now, although I am not the person I was when it comes to stamina etc. Musn't grumble though as at least I am not in a wheelchair anymore, I am too stubborn to stay in one and I think that is what keeps me going!!

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Maureen | 04/04/2007 16:19:00

My symptoms first surfaced when I was 30, with urinary incontinence and depression. I was treated for each of these problems by a bladder repair, which had no effect on the incontinence, and anti-depressants . The depression has been a chronic problem. I also suffered severe facial pain, had three teeth extracted (the teeth turned out to be perfectly sound) Next I was told that a deviated septum could be causing my facial pain, and subsequently underwent an operation to correct this. That didn't work either. Soon after that,I began to have bad back pain and loss of sensation in my right leg and foot. A spinal operation (a laminectomy) provided no relief for this pain. I went for physiotherapy, but the physiotherapist referred me back to my GP recommending that before she treated me, I should possibly be referred to a hospital consultant. So I was finally sent to a neurologist, who looked at the whole history, and told me that MS was a distinct possibility. Before I could go for the spinal tap, I suffered A brain haemorrhage, and the neurologist decided that he did not want to subject me to the trauma of a spinal tap, so I am still an unconfirmed MS patient. The neurologist now sees me every 6 months, and prescribes medication to alleviate the symptoms, and he also sent me on a pain management course at The Walton Centre, which was physically and psychologically very helpful. I do resent the fact that until I saw the neurologist, my many symptoms were treated individually, and no-one had any interest in looking at the picture as a whole. I felt too that I was forever going to the doctor, but never getting any better, so I seemed to be banging my head against a brick wall. END OF RANT!!!

Pjhoney | 04/04/2007 16:33:00

I first started suffering symptoms around 1991 (age27), by way of tremors in my right hand and arm, then total blindness in my left eye, then pins and needles from my toes to my lower back. All of these attacks lasted a month each before they started to clear up and were about 2 years apart each. After the pins and needles I was sent into hospital for tests (6 months after due to the waiting list) where i had a lumbar puncture and a whole weeks worth of blood and sensory tests. After this my doctor told me that it was possible that i MAY have MS. In 1995 I moved to Ireland and on registering with a new doctor and mentioned the 'possible MS' I was told not to be so stupid there was nothing wrong with me. In 2001 I moved back to the north west, and once again registered with a new doctor. After a year I dared to mention to him that I was suffering a lot with fatigue and that I felt I was constantly walking through thick mud. He told me to walk up and down the corridor at the doctord while he watched me, and then said 'it's the MS', presuming I knew I had it because my notes declared it obvious in around 1995. BUT NOBODY HAD TOLD ME! I even had critical illness insurance on the mortgage, which they promptly declined to pay and told me I had filled the application fraudulently, as my notes stated the MS before I took out the insurance. At present I had to stop working nearly two years ago due to my employer's management changing hands to somebody who did not sympathise with the difficulties related to the illness. Like many sufferers, I look perfectly healthy from the outside, and find that this means I can be looked at like a druggie or alcaholic when my walking begins to flag, which it always does. Because of this I don't like to go out on my own as I find it very intimidating. I get no financial help from anybody as incapacity is out due to my being a full time student for a few months of the previous three years when became unable to work, no jobseekers as my employers still haven't terminated my employment, (as I think they expect me to go to tribunal, which I have already said I won't!), and no income support as my partner earns more than £85 pounds a week, and apparently that is enough to continue paying the mortgage, bills, etc, oh yes, and eat! I've tried to apply for DLA twice now, and have been turned down, am trying to appeal at the moment with the help of the CAB, who have told me that I should lie in completeing the claim, as the points needed will never be reached otherwise! I suffer mainly from severe fatigue, and some remaining lack of coordination in my legs and arms, along with considerable nerve pain in my legs after any exercise. lack of concentration, stamina, motivation, depression, and severe headaches. I take anti-depressants, painkillers, and have been taking Modafinil (also known as Modiadel or Provigil) for the fatigue. This is definately a help and I am in the process of getting the dosage just right at the moment. It is normally prescribed for narcolepsy, and is quite expensive, as my doctor likes to remind me because I am the only person at his surgery thats on it! I am lucky in that I happen to live in the catchment area of the Walton Neurology Center in liverpool, and visit my specialist there once a year at present, but can ring any time if needed and arrange to go in. When I do I see the specialist, the occupational therapist, the physio, and the MS nurse, if I feel I need to, as they are all there. If only for the reason that they know I have MS and acknowledge the problems, and will do all to help, makes me feel very safe and secure there, as apposed to everywhere else where I feel I shouldn't mention it because people just don't understand, or believe. I have won a challenge recently however, as I have just heard, after 18 months application process, that I have succeeded in being appointed as a Magistrate on my local bench. I know I am so lucky compared to some but you did ask how it affects us! Keep smilin everyone.

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Gillian | 04/04/2007 19:44:00

My hubby has MS & I think that we were very lucky in that my GP knew that we were intellegent people who didn't rush in with problems. Having been through the system with him I have found the following problems: 1. The hospitals refusal to tell us that my hubby could have MS (takes 3 episodes!). 2. A complete lack of understanding from all the services about MS. 3. Problems finding a neurologist and then getting in to see him as an urgent patient (took 6 months as an urgent needs to be seen now patient)! 4. Obtaining drugs. There are many trial drugs in the US which, if they prove successful, will take 10 years to reach us, far too long for current sufferers. 5. Early treatment. I have RA and the first thing that a rheumatologist does is give steroids or methotrexate to dampen down the inflammation. I read somewhere that neurologists were trialling this with positive results. If this helps slow down primary onset, why isn't it given more often? 6. Lack of communication & information. Unless you spend your life on the internet then it is difficult to understand what is happening. I have rung the MS helpline and they are wonderful people. Unfortunately, not all of them can supply the help or info needed at the time of the call. 7. Getting help is almost impossible. If you are chronically sick then it is often difficult to ask for help and it is difficult when the people you ask for help are offhand as they do not understand the problem. Unless you are in a wheelchair there is nothing wrong with you attitude. You cannot do anything about peoples attitudes but better education or updates for doctors etc would be a start. More information on the disease made available to people like social services so that they understand better. Faster access to drugs that have been trialled and tested in places like the US would be a help. More clinics that support the various and elusive conditions inclduing MS, RA, ME, polymyalgia & fybromyalgia which should include physios and disability advice both legal & physical. Volunteers to help with the garden, shopping or transport. To me it is the utter hopelessness of watching the person I care about slowly going downhill without being able to do a thing about it. Alsom frustration as it is often impossible to get the help needed to slow down the decline. If some of the suggestions that I have made could be implemented then it might help lots of people. I suspect that all of us have been made to feel small, belittled and a drain when needing practical help & advice. GPs not having the time to talk to us and diagnosing the disease (no time due to the government pays them, no money so postpone the inevitable paying for expensive drugs). I suppose that I am saying that we need to be treated as people not a disease with a body.

Ruth | 04/04/2007 21:21:00

The first symptom for me was back in 1999 when I lost the feeling in one side from the waist down, I saw a neurologist privately (I was worried it was a brain tumour and couldn't wait for the NHS) and he suggested it was a virus and told me to come back if it did not come back in 6 weeks. He tested my reflexes and my notes show he suspected MS at this stage but he said nothing to me. In early 2001 I had optical neuritis and went blind in one eye, apparently this is a classic sign. the eye hospital sent me for an MRI after prescribing painkillers (I did nearly thump the Dr when he said it wasn't painful but satisfied myself with asking whether he had had optical neuritis and when he said no assured him it was very painful) and I eventually went back to a Neurologist for the results in 2001. I had researched optical neuritis and was expecting the diagnosis so was not surprised when he told me I had MS. I asked what I should do and whether there was anything I couldn't do, and what the prognosis was. I was told to stay slim and there was nothing I couldn't do except get too hot. I asked about treatment and was told there was none approved unless i had a relapse when I would be given steriods or possibly other treatments if I qulaified and they were relevant to keep me mobile but that they had side effects even if they were available on the NHS. He said I may never have any other symptoms, I could have regualr episodes and recover from each, I could have regular episodes and get worse each time or I could get worse suddenly but he thought not the last one as I had recovered from two episodes, but I would have to wait and see. I was then discharged with a telephone number for an MS nurse. - I have never been offered any medication or any other support. My optician tells me both optic nerves are inflamed - I did research and found the diet and exercise regime I was following seemed sensible and appropriate so I have continued as before - I work full time and run a large team, I also have a part time job in youth work. My employers are not aware of my condition, some of my colleagues are and were shocked at the lack of support I received but see me the same as ever as I carry on as normal. They were amazed I was able to cope with the uncertainty of the condition and it's effects but as I tell them we could go under a bus! - I am fortunate that I do not need any personal support, I do get very tired (is that MS or 2 jobs and a busy life)?? and once went to the Dr about this, he injected vitamin B12 and told me to rest. I do have a cleaner as I did not have the energy to keep my home properly clean but otherwise I work and travel as normal including scuba diving, I occasionally lose bits of me to numbness and get strange visual effects but I carry on with life. I have never had time off sick from work for anything including going blind in one eye, I was at a step class while my lower half was numb, I just watched where my foot was going I felt best when I had a waterborn poisoning last autumn, maybe my immune system had something real to focus on for a while - After the initial diagnosis I have seen nobody, as I am generally fit I rarely go to the GP and my one visit for tiredness was so unproductive I have not wanted to go back. The practice nurse once asked if I was reviewed while I was seeing her for travel innoculations because I asked if there was any reason not to have them with MS, but she said nothing else when I said no and I have not asked for more support. - NICE, seems to make arbitrary decisions that affect the quality of many peoples lives be it Alzheimers, cancer or MS, I do not feel they provide a quality patient centred service merely a cost saving one.

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jonathan | 04/04/2007 21:41:00

Iwas diagnosed 11 years ago, even though it is nobodys fault, I feel as though not enough information is being passed on to the people who's life has been turned upside down, US. Not enough is done by the NHS regarding neither by choices of treatment or much interest by my neurologist or by the MS nurses, WHAT DO THEY DO. I became so frustrated with the whole situation, I went to Holland for stem cell treatment. It is not important, albeit the dissapointment that the treatment was not as sccesful as I was hoping for, the fact that I was not given any encouragement from the british medical profession made me more determined to try anything new. I have had some minor improvements, which made it worthwile. The conclusion that have come to is, don't wait for others to help do whatever you can for youself. Good luck a

Jonathan | 04/04/2007 21:48:00

I was diagnosed 11 years ago, even though it is nobodys fault, I feel as though not enough information is being passed on to the people who's life has been turned upside down, US. Not enough is done by the NHS regarding neither by choices of treatment or much interest by my neurologist or by the MS nurses, WHAT DO THEY DO. I became so frustrated with the whole situation, I went to Holland for stem cell treatment. It is not important, albeit the dissapointment that the treatment was not as sccesful as I was hoping for, the fact that I was not given any encouragement from the british medical profession made me more determined to try anything new. I have had some minor improvements, which made it worthwile. The conclusion that I have come to is, don't wait for others to help do whatever you can for youself. Good luck and try to keep smiling

Kim | 05/04/2007 00:05:00

I was diagnosed in 2003 just 3 short months after marrying and if it wasnt for my husband I would be house bound I say that all the carers should be praise more, I take my medication but still I get episodes that are all most unbareable at times. Life was meant to be good but instead we have had to learn to cope with the affects of MS I never thought that it would happen to me but it has so to all my fellow suffers keep smiling and remember your not alone we are all here write down what your felling I find it helps. Good luck everyone

FriendlyLynn | 05/04/2007 01:16:00

Well where do I start! I have a medical history going back to my problems whilst trying to walk as a toddler & was eventually finally diagnosed with MS in March 1989. The previous couple of years had been horrendous as various symptoms kept reacurring that caused me to eventually seek medical help. Many tests were conducted at various london hospitals before I was diagnosed which was in a way a relief. I will never forget what I was bluntly told at my diagnosis by the consultant-"you have MS for which there is no cure, I had to go out & learn to live the best life I could despite the certainty that I would get increasingly worse, no one could say how long I had or when I would eventually end up in a wheelchair". Since then I have had my now seventeen year old teenager son & several relationships which have had to take the MS into consideration. I am not one to ignore symtoms or exaggerate them, I just learn ways to get round each problem as it happens. In 2002 I fell downstairs which besides dislocating my shoulder upset my already weakened body & more MS stronger symptoms reared there ugly head. My local GP suggested that perhaps I now needed a fresh look at my diagnosis & ways to make my life easier compared to before. So he sent me into Hope Hospital Manchester for a week of tests. A waste of time & only made my situation much worse was the verdict from myself & those caring for me & no additional improvements to my condition or ideas on medications, which my GP had hoped for. Some how I had memories of previous visits to hospital as a in patient where nurses actually cared for their patients. No chance whilst in Hope, my son who was visiting after school & my husband did more caring than any of the staff. The only two decisions from that week that were of value was that my life needed to be reassessed by local social workers & I could do with having a wheelchair to use outdoors. Last July my carer who was also my husband chose to walk away & go off else where with some one new leaving my teenager to do the caring with friends to help. My local GP is as supportive as ever & continues to monitor which pain killers I can take as I am allergic to many of the routine ones. I am on Ibruprofen & paracetamol & Codeine plus occasional sleeping tablets & use as many disabled aids as needed & ways to relieve the endless pain without needing prescription drugs or paying lots of money out. Despite using the wheelchair to go out I look like a normal young lady & many find it difficult realising just what effect MS has as you cannot often see it's symptoms. Coping with the tiredness is the biggest limitation for me & the effect on my body even when I do very little compared to others. I also feel that many do not really understand what it is like to have the use of your legs or hand one day & face the reality a day or so later that the limb no longer works & you cannot turn the clock back.

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Karen | 05/04/2007 07:35:00

I was finally diagnosed in December 2002. It took Doctors a number of years to finally listen to me. I had been telling them for years that I was having problems, but they kept putting it down to being tired and having small children. I was expecting the disgnosis when it came as I am very familiar of MS. Both my father and brother also have it. I am lucky in that I generally only suffer from skin sensation loss, no balance problems or walking difficulties. I participated in a drug trail for 18 months but after suffering a stroke at the age of 37 was taken off the trial. I now take Avonnex which appears to be working (but can we ever tell). I see my neuro every 6 months and he is great. My husband and 4 children are very supportive. I am now a stay at home mum, one day I hope to return to the workforce, maybe when a cure is found for the relentless fatigue. Fatigue is my biggest problem, being tired constantly can really get you down, no matter how much rest you try to have it remains. I have given up trying to get people to see that even though I look good and walk well this does not mean that I feel well. Remaining positive and doing the best that I can I tell myself that one day I shall beat this nasty disease.

sheltie49 | 05/04/2007 09:07:00

I was eventually diagnosed in 1998 after an episode when I lost all feeling from the waist down. At the confirmation of MS I was told I was lucky not to have had any symptoms in the preceding 12 years, after my first episode - I had then been told categorically that I did not have MS my problems were all in my mind!! I was also told I did not have to tell anyone what was wrong with me and to carry on as normal. I did make the mistake of telling my employers my diagnosis however and that was the start of a campaign by them to convince me that I was not fit for my job and to put as many obstacles in my way as they could. I eventually gave up work in 2002 after a minor car accident made my MS symptoms worse. I have had several relapses over the years and each one leaves me more debilitated but because the progression seems slow to the professionals they are not really too interested. I have support from my GP, physios and OTs and a rehab nurse which is great but no help from neuros as they have told me there is nothing they can do to help with my problems - they don't know how to treat them. I have the usual bowel and bladder problems along with altered sensation along my body, a feeling of being bruised and the MS hug. The main muscles in my right leg are not working properly, no messages getting through to them and I struggle to keep on the move. My husband has done the head in the sand bit and been working abroad for the last 4 years, I have only seen him for 6 weeks in that time, so I am on my own and feel I just have to get on with things as best I can. I have Lyrica and Tizanidine to help ease pain and spasms and Tolterodine to help bladder activity. The nueralgia pain in my scalp is the hardest to treat but I have been getting experimental treatment from the pain clinic for several years now when a painkiller, and steroid if needed, is injected under the scalp around the main nerve to dampen it down - the relief after a few days is incredible! There is no MS branch near to me so no real support that way and not a lot of contact with others with MS apart from those I have met via other means. It would help to have more people to talk to who understand what you are going through. I have had an interest in MS for many years before I was diagnosed as I come from an area where the incidence of MS is very high and must confes that they are still asking the same questions now that were being asked in the 1970s and there are still no answers!

GILL 5/4/07 | 05/04/2007 09:30:00

HI WAS DIAGNOSED WITH MS 4 YEARS AGO. HAD NO IDEA THAT THE OPTIC NEURITUS I WAS SUFFERING WAS THE FIRST SYMPTOM. NO ONE TOLD ME. WAS LEFT TO GO PRIVATE TO GET TO THE BOTTOM OF IT. HAD TO HAVE BRAIN SCAN WHICH TOLD THE STORY. THEN I WAS REFERRED TO NHS. ANOTHER BRAIN SCAN WHICH SHOWED THE DIFERENCE BETWEEN THE FIRST AND SECOND. MORE LESIONS. BUT SINCE THEN I HAVE BEEN RELATIVELY HEALTHY. JUST FEW ODD THINGS LIKE LOSING USE OF HAND FOR A TIME. LEGS FEEL TIGHT AND ODD BUT CAN COPE. NOT TAKING ANY DRUGS AT ALL. ONLY PROBLEM SEEMS TO BE CHOLESTEROL TOO HIGH. APPARENTLY THAT IS A SYMPTOM TOO. CANT GET THE COUNT DOWN EVEN WITH DRUGS. NEXT APPT IS IN NOVEMBER BECAUSE A CLINIC HAS BEEN CUT AND MY 6 MONTH CHECK HAS TURNED INTO 11 MONTHS. WHATS THAT ALL ABOUT. I AM ONE OF THE LUCKY ONES. SO FAR SO GOOD. I WORK FULL TIME AND KEEP AS ACTIVE AS POSSIBLE. NOT LETTING A LITTLE THING LIKE MS GET THE BETTER OF ME.

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jackie | 05/04/2007 10:59:00

I was not told for over 10 years that I have MS, this only came out when I saw a house doctor and the specalits currently my GP trets each new simpton that pops up. I take 18 tablets daily of them 8 are painkillers. The main problem i have is always feeling very tiered, sleep is not good I think that I get one goods night in a month, then my legs and arms take on life of there own or the go dead or lock or all three together. When I get a good day I want to do more than I should then i pay for it the next day. It took several years for me to find the right level of activeity, when the end of the day cames around I am not falling aslep at 8pm. I found a great supplement from a company in the USA, they have seeral producets and the great thing is that I don't need water or anything to take them. They have energay, vituemins, minuerals, wieght loss, and joint products and they are growing in there producet range. I have to follow a Gluten Free diet as I diagnoesed with the Coeliac condition in 1974 and good thing about the supplments are they are all Gluten free and they all conform to Jewish and Muslim religis needs. If anyone wants details of these supplemnts I will be willing to supply them to you, they have benefited me greatly as I have more energy and feelt better, I would like others to have the chance to try the engery supplement and see if it helps them.

Lorna | 05/04/2007 14:57:00

I was diagnosed in 1999 after suffering symptoms for 20 years. The only help I received was from a new GP who is fantastic. My consultant,at the time, was as much use a an ashtray on a motoprbike. I have used beta interferon and glacimer acetate, but, major side effects stopped me taking this medication. I now basically listen to my body, when I'm tired I rest, If I feel that I'm in a relapse I try to manage it myself with my GP's help.

Hunny 53 | 05/04/2007 15:18:00

I was diagnosed with M.S. in 1994. As with most of the others here, I went through many years of tests and mystery illnesses. I had so many tests and saw so many doctors, some even went so far as treating me for mental illness. I finally after having 4 thick medical records folders on me, I decided to find out what was wrong with me by the aid of a medical book. I had all the signs and symptoms of M.S. so I told my G.P. I would like to see a Neurologist. He laughed at me and asked why I needed to see the Neurologist. When I told him my findings, he says that he had gone through 12 years of schooling to get where he was and he knew beter than me. Well I told him that I can read medical books too. After seeing the Neurologist, the confermation of M.S. was given to me. So, I say to you if you susspect anything, read all the medical information yourself. Don't wait for the doctors to do their job. And it should be up to the patient what treatment they should have.

Marie | 05/04/2007 15:39:00

Thanks for the invite. I post info for MS on my blog at www.soulsofwindows.info Please feel free to stop by and read and leave your comments

Tracy | 05/04/2007 16:14:00

Diagnosed in 2005 after what i now know to be 8 years of symptoms. MRI and lumber puncture confirmed.. Felt felief that i was not going mad or the doctor thought i was a hypercondriact!! Only the last couple of years having more relapes with different outcomes.. Been on Avonex for 6 months but no improvement so waiting on next neuro appointment.. Only complaint is living in Cornwall access to specialist and Ms nurse is limited..Great support from G P and family.

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julie | 05/04/2007 21:21:00

Hi, my partner was diagnosed with ms about 3yrs ago, his symptoms started with servere headaches which the doctors said was nothing to worry about, it wasn't until one day we noticed that every time he ate he dribbled from one side of his mouth and he was complaining of not being able to see properly she ran a few quick tests on him and thought he may have bells palsy or may have suffered a small stroke ,she said she would contact the neuro department for an appointment but warned us this could take up to 6mths to get an appointment as i was not happy with this i told her i would take him to a&e department to be seen quicker she agreed and phoned them to say we were on our way and also gave us a letter to take with us, when we got there they already had a bed for him waiting lots of tests were done including 2 lumbers which confirmed ms, he was given a 3 day course of steriods which changed his moods very quickly happy, tearfull, forgetfull etc. stayed in hospital for about a week He is doing well at the moment still working sees neuro every year and we have a wonderfull ms nurse who sees him every 6mths or when ever we need her. We are still trying to come to terms with things, as he gets very tired and still has severe heaadaches, he used to say what if this happens and what if that happens, now its a case of deal with it when it happens and just enjoy yourself now.

Dibba | 07/04/2007 09:26:00

My sister was diagnosed over 10 years and it has been and is absolutely horrendous watching her deteriorate. She lives on her own and we do as much as we can for her it is extremely difficult. We have had to chase the supposed professionals as she practically sits in her home on her own day after day. She is unable to do any of the tasks able-bodied people take for granted and qualifies for a 3 hours a day help from a carer. We have had to install an emerency alarm so that when she falls which practically all the time someone can get to her within 15mins. Christmas it took four of us to heave her up the stairs to usethe toilet which must have been painful for her as we had to plop her down a few times before reaching the top. What kind of society are we living in which leaves people to manage this horrendous disease on their own. The whole situation is very upsetting. The situation is not helped as she also is fiercly pig-headed and stubborn and at the end of the she can't be forced to do anything she doesn't want to do.

Mrs. J. Adkins | 09/04/2007 17:20:00

I find that MS is a very depressing disease

Cristina | 10/04/2007 17:07:00

I had first symptoms 13.5 yrs ago (when I was 22). I was given IV steroids, studied a bit, after 4 days I was back on my feet, after 2 weeks sent home. Doctors thought they would do me a favour by not revealing their suspected diagnosis and sent me to psychiatrist telling me that I am just worrying myself sick (imagining things). Since then I had mild symptoms now and then, mainly when I was stressed or overworked. Every time I ran to psychiatrist for some tablets and injections (vitamin B, I was told) and that put me back on track after couple of weeks. Then I moved. In my new town I did not have the same network of 'informed' psychiatrist, so I just reported myself to local GP and described my periodic problems. She sent me to neurologist, who did not find anything (as normally I do not have any symptoms and MS would be virtually impossible to detect without any). After particularly difficult personal turmoil I berried myself to work. For a while everything was fine, but winter months came and I started having my weird symptoms again: numbness in leg (or legs), tightness around my chest being the main ones, initially at least. I was trying to shake it off, but every time I tried to return to work, I relapsed again. Finally I was hospitalised (by then I was almost unable to walk and vomiting violently). After a week of studies they gave a diagnosis: MS. I went through horrible emotional rollercoaster (made worse by the fact I was all alone in this part of world without my support system - family and friends). I am not going to describe this period - I am sure most of you know the experience from first hand, either yourself, or your friend or loved one. Since my diagnosis (in Apr 2003) I had 3 more relapses (every winter after the diagnosis), from which I recovered fully every time. I have so far refused all offers for CRABs (excuse: I am doing so good most of the time) and implemented common sense protocols - Swank diet, vitamins and supplements (since Autumn 2003), exercise (3-6 days a week since 2001), vitamin D regimen and finally LDN (since Apr. 2005). I am doing better than ever since I had first symptoms, so good in fact that some doctors have thought even I have benign form of MS. This is unfortunately not true, having had 4 relapses every winter until now. However, since starting LDN and vitamin D I have not had a single relapse and also other minor symptoms I had between relapses - have resolved! I have been symptom free 2 years and I am convinced LDN with vitamin D are to thank for this!

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Crystal | 12/04/2007 01:31:00

I was diagnosed with Secondary Progressive MS and Transverse Myelitis November 2004. Here is my website with my story and other information - WWW.CRYSTALANGEL.ORG

Crystal | 12/04/2007 01:34:00

I also take LDN (Low Dose Naltrexone) for my SPMS and TM. I have been on it for a year and a half and doing great. There is more information on LDN on my website at WWW.CRYSTALANGEL.ORG - I also keep a Dr list of Dr's that prescribe LDN in the states and other countries so if interested please feel free to email me at crystalangel6771@yahoo.com

J A F | 30/04/2007 15:35:00

I am one of the people with multiple sclerosis, and I am not interested in slowing progression at this time, I am more interested in life, I would like to be able to function day to day. I have my ideas about multiple sclerosis, I do not believe that it is a immune problem. I believe its environmental, I believe it is caused by toxins within our environment, that triggers lots of illnesses. I believe that it corrupts different proteins in our bodies and their absorption. I believe it has lots do with oxidation and oxidative stressors.

Que | 30/04/2007 16:05:00

In 2001 I stepped on a crochet hook and punctured the bottom of my foot. A few months later I got ill and was later mis-diagnosed with Lupus. In 2005 began experiencing a different set of symptoms and MS was hinted at. Further tests revealed nothing so I saw many neurologists who all said that I did not have MS but rather a lupus flare as symptoms persisted. In April 2006, I received a cortizone injection into the injury site of the foot and the following day woke up blind in the left eye. I was dxd with optic neuritis and referred to a neurologist. Testing finally confirmed MS as I was in an exacerbation. It took months to recover. My story will be shown on Discovery Healths Mystery Diagnosis in June. I also advocate MS awarness with an emphasis on the African American culture. You may find us at http://www.yahoogroups.com/group/The_Urban_Multiple_Sclerosis_Alliance Thank you for allowing me to participate.

Hilary O'Brien | 30/04/2007 16:26:00

Hey everybody, I've had MS for 30 years. And my story is alittle tragic so I wrote a book about it, alot of research, lot of information. Please read it and tell me what you think, it is avaliable on Amazon.com. It is called Lost In Illusion by Hilary O'Brien. Thanks a million! Sincerely, Hilary

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Dudley Delany | 01/05/2007 00:09:00

Based on my personal experience with MS and my background as a healthcare professional, this site contains my advice to people with MS -- http://tinyurl.com/grpm9

MoiAnon | 01/05/2007 07:54:00

I have been diagnosed for 5years now nearly. At first I got help but after that the new MS nurse who replaced the old one at medway is les help than the speaking clock! She lies and makes you out to be mad when in all effects I lose use of certain limbs NOT my mind! You go to see the neuro and he talks but you get given ZERO help or assistance or even offer of it. So I struggle on alone. Ifthere is help out there it definitely is not in my region. I feel alot of the time to be a very isolated peron I have children and feel so dependant on my EXpartner and the older kids I just want my old life back. I rarely leave the house bar to hobble kids to school or go to hospital visits or physiotherapy. I am so tired yet I cannot sleep I wake up with pains and cannot get back to sleep so am so tired I achieve very little in my sad existence. But bar all this I AM happy, I just feel so alone and have nobody to turn to.

Dan L | 01/05/2007 18:12:00

I was diagnosed withMS when I was 23 and I didn't go on any medication until I was 40. Since then I have tried everything from Avonix to Novantron. I am now on Tysabri for 8 treatments and it seems to be the first medication with no side affects. My MRI's show that it seems to be helping and I can go about my normal schedule. Everyone needs to listen to their own body and then their doctor, but Tysabri is great for me.

Emily | 01/05/2007 20:32:00

I was diagnosed unofficially in 1992 with a neurological disease that was all in my head brought on by stress and told to quit my job. Then to make this a shorter story I pursued many avenues and finally in 1998 after MS clinics, 2 spinal taps, vision screens, a neurologist told me I had MS but did not know what kind. You see I had symptoms that would come wane a little and then go away nothing serious. Numb spots, the MS belt, balance off, headaches that were migrane in nature but nothing helped relieve them. My spasms increased in 2000 and the total exhaustion set in. My new neurologist just saw me once a year and basically after 10 minutes politely told me to go home until I worsened. Gave me Baclophen. Last year he told me unless I was severe he would not like to see me at all. BAH I did start to progressively get worse and then about three months ago I found LDN low dose Natrexone. Crystal Angel and another group helped me to gather enough information to present to my GP that he agreed. Now even he is amazed. No this is not a cure it just stops the progression. I am off of the depression meds and even may not need my thyroid meds anymore. Have to wait and see. I did gain sensations somewhat in my hands and the spasms have lessened. But the progression has stopped and now I am working on building muscle back. Thanks for reading and go check out WWW.CRYSTALANGEL.ORG, not affiliated with it just love what the LDN can do. It is very subtle but I can tell it is helping me. No side effects except I can dream again and they are pleasant.

cindy b | 08/05/2007 19:22:00

relapsing remitting ms avonex user for 8? years now. my husband injects me 1 night a week. i take 2 aleve tabs 30 min. before shot. most weeks i am not even affected with the flu-like side effects the next day. have had few attacks since on avonex. diagnosed in 1993.

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Scott | 12/05/2007 14:58:00

six years ago was diagnosed wit progressive ms. so i did the copaxone for a year then went brack and anoother mri showed someone the copaxone weren't doing a thing for me.about this time i see avonix got ok ed by fda or whoever it is who ok's drugs.well i was on that for a year and half, ever though i was sick two days out of the week.so i did my injection on fridays , that way i could stilll work .well now i nno longer work. my doctor wanted too try rebifthink thats right but a shot every two days and made me sick just like the avonexwell i stopped that after a week of flue symptons so until these people find something that will cure what i got , i'lll smoke my weed with no side effects i can't live with.

elsie k | 20/05/2007 17:02:00

I was diagnosed in 1988 at age 28. I was in the Beteseron lottery. I have been hospitalized 3 times. In 1999 I had to retire from the VA after being in the hospital with my left side paralized. In 2004 i did the chemo treastment Novantrone. I was two months from a wheelchair. I did a total turnaround on theis treatment. I now can walk, sometimes with out a cane, I have lots of energy and do just about anything I want. I maintain a positive attitude with is key to dealing with MS. I got married for thw second time on Dec 31, 2005, to a wonderful man who fully understands and respects me and my limitations. i exercise regularly, sing in a pop choir (I sit on a stool to preform), sew, quilt, paint and anything else I want to. I live life as I want to and refuse to let my MS make all the decisions for me.

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daisykins | 02/07/2007 11:35:00

I am shocked by NICE's attitude to date - Multiple Sclerosis can be such a debilitating disease, we need all the help we can get

Roger W. | 02/07/2007 11:35:00

i am appalled at the NICE's stance on Tysabri. Every patient should be allowed to make an informed decision about whether or not to take a treatment given the available information. Personally, I have been on this medication for almost 8 months and it has completely halted my progression. This is coming from someone who has been in a downward spiral since diagnosis in '03. Can I say it's 100% safe? Absolutely not, but I was detiorating so rapidly and had tried all other medications that this was a no brainer. Get your head out of your ass U.K. and let the people try this med if they so choose. MS does not wait for science to catch up. Roger

Jeremy | 02/07/2007 11:36:00

i am a firm believer that these types of decisions should, for the most part, be left up to the doctor and patient. There appears to be enough benefit that the risk is justifiable in some cases.

Mr E Smith | 13/09/2007 14:00:00

just learned that my ex-wife died of MS recently, read somwhere about a link with a pig virus, her second husband worked with pigs, also 2 old friends from the area (weardale, co durham.) have MS and both have husbands who worked with pigs? seems strange!

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