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multiple sclerosis community | escapecafe.org.uk

2023-01-12T15:32:00.000-08:00

THE ESCAPE CAFÉ MULTIPLE SCLEROSIS NETWORK

Escape Café has been set up as a meeting place (could be anywhere…)

For someone with MS to escape the friends and family (although amazingly supportive…) to meet with someone who has MS too…and knows what you are talking about

Everyone is different and dependent on how you live your life symptoms can vary immensely from person to person.

At Escape we have several members who have something to say and explain on their experiences.

click here to read Sharon story

We are a positive and happy group of young to middle aged and older people who are living with MS and coping.

We have MS but MS does not have us!

Life is for living and coping, we hope to just ‘be there’ for others who need a little escape…

You will be glad to hear that you can contact us by email or meet us in person, we tend to keep in touch (sometimes an angry frustrated text to and MS buddy can help…ha-ha)

click here to read David's story

We can provide a one to one mentoring service with a member who has had MS a long time and is there to just have a chat.

I do hope you will consider joining our small social network and just talking is good for everybody…sharing the frustrations (we all deal with sometimes…)

Yes we may have MS...but MS does not have to have us!

meetings take place every Wednesday @ 11am in Cape Cafe, Beaconsfield

Station Road, Beaconsfield, HP9 1NN

01494 681137 begin_of_the_skype_highlighting 01494 681137 end_of_the_skype_highlighting

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2011-07-21T15:49:00.000-07:00

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Look cool without breaking the bank.

Click one any one of the T-Shirts to visit the MS Clothing Storefront.

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Articles

2011-07-21T12:36:00.001-07:00

Articles

David's Story

2011-04-26T06:47:00.000-07:00

It was January 2008. I had recently moved back to the UK after living abroad for 15 years. I was starting a new life after a very stressful period that had culminated in a number of major losses.

I remember walking up the high street on my lunch break and everything looked strange, like I was looking at the world from inside a goldfish bowl.

Investigations led me from my GP to a neurologist, from a diagnosis of migraine to Multiple Sclerosis.

Aside from the distorted vision my left arm and leg were also affected.

Getting the diagnosis was a shock and for a time I was quite low. I knew from my training as a psychiatric nurse that achieving some sort of control over what was happening to me would be important for my mental health. I also knew, as the saying goes, that ‘knowledge is power’.

In order to gain control I needed to learn as much about MS as possible. If I knew what caused it I could do something about preventing or at least limiting further damage. I decided to do everything possible to give myself the best chance possible.

From personal experience in the early days post diagnosis I realized that when I became stressed, anxious, frustrated or low my symptoms worsened. I also realized that worrying was the catalyst for these emotions. In addition to this I was aware of the mind body connection; what we think and the emotions we in turn feel directly affect our physiology.

For example when we feel embarrassed we blush, when we are stressed our heart rate rises.

My first goal was therefore to remove worrying from the equation. It just wasn’t an option anymore. I quickly realized it served no purpose in the first place, that it was just a habit and without it I felt quite liberated.

I had always been what I called “a worrier” and used to say to people when they asked about it, “I wake up worrying, I worry all day, and I go to bed worrying”. I consider giving up my addiction to worrying the first of many gifts I got from MS. I do still have episodes when I find myself stressing about something that happened or might happen. At these times I remind myself of the choice I have between worrying and worsening my symptoms and not worrying and enjoying the present moment. Realising that worrying achieves nothing makes the choice easier.

My second step was to try and critically analyse research that existed on the disease.

I was surprised to find that orthodox medicine knew very little about what makes the immune system attack and cause the damage to the myelin sheath that ultimately led to the symptoms I and other sufferers experienced.

As a layperson I found the research papers difficult to evaluate and, as most of the research was funded by pharmaceutical companies I suspected that their integrity was compromised by vested financial interests.

I was however relieved to find a book by Professor George Jelinek MD called ‘Taking Control of Multiple Sclerosis’. As both a person diagnosed with MS and a Professor of Emergency Medicine who also edited a medical journal, I had found someone who could make sense of the research and whose interests were no different to mine.

In the book he gives a very clear analysis of the pros and cons of each of the disease modifying drugs. Something I found very helpful as both the hands of my neurologist and MS nurse were tied to the point where they were not permitted to give guidance.

I chose Copaxone (Glatiramer Acetate) because it has significantly less side effects than the interferons and clinical trials indicate ‘that the chance of a relapse for a patient on glatiramer was about one-sixth of that for a patient not on glatiramer’. Also that, ‘approximately 70% of patients continually on the drug for 6 years were either the same in disability as when they started, or were somewhat better’.

These benefits far outweighed the disadvantage of injecting daily. If I find myself starting to think about stopping the injections, which believe me I do not enjoy, I always come back tothe bottom line of giving myself the best chance possible, and see it as the lesser evil.

This book also showed research into how important diet is, which led me to the Best Bet Diet and Dr Ashton Embry PHD, a scientist who became actively involved in researching MS when his son was diagnosed. Because he was primarily motivated to help his son, he was another medical professional I felt I could trust. The basic tenets of the Best Bet Diet is to avoid foods that have proteins similar to that of myelin, foods that are also considered antigens which can trigger an autoimmune response in the body. The 3 key enemies are gluten, dairy and legumes.

For more information I advise going to his website www.direct-ms.org. I also recommend reading his review, The Multiple Factors of Multiple Scleorosis: A Darwinian Perspective published in the Journal of Nutritional & Environmental Medicine (2004) 14(4), 1-11; found here: http://www2.kemc.co.uk/clients/msrc04/downloads/bbd_embry_JNEM__Multiple_darwin.pdf

When the excitement started concerning a new treatment and understanding of MS known as the Liberation Treatment and CCSVI, I was of course very interested.

CCSVI is a condition in which a blockage or narrowing of veins in the neck results in blood being trapped in the brain. The theory is that this in turn triggers an autoimmune response as a result of the deposits and trace elements that are contained in the trapped blood.

The Liberation Treatment opens those blockages, allowing the blood to circulate freely. Information can be found here: http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2944

Over time there were countless positive reports from MS sufferers who had undergone the Liberation treatment and were now experiencing noticeable improvements in theirs symptoms. For me that was the proof in the pudding.

Dr Embry’s paper, ‘CCSVI and Multiple Sclerosis: Integrating New Data to Help Guide Actions’ (found at http://www.curearchives.com/CCSVI-and-Multiple-Sclerosis-Integrating-New-Data-to-help.t6341-103.html ) evaluated the research available and summarized that ‘although CCSVI by itself does not cause MS it is a causal factor that contributes to its progression’; also that ‘CCSVI is a significant accelerant of the MS disease process’. Because of this her recommends ‘it is essential that every person with MS be properly tested for CCSVI as soon as possible’. He did not claim it was the be all and end all, and also advised continuing with the Best Bet Diet.

Although Dr Embry states that ‘presently available data indicates that the current drugs do little for slowing disease progression’, I personally see no harm in also continuing to take Copaxone even after the Liberation Treatment, as long as I continue to experience no significant side effects. Again it’s all about giving myself the best possible chance.

There were however, reports from some in the medical profession wary of both CCSVI as a factor in MS and of the safety of the treatment for it. Examples of two procedures that had resulted in death were even cited. These reports had planted a seed of doubt in my mind but I was reassured when I noted Dr Embry had disclosed the vested interests of those in the medical profession who were behind the scaremongering; that they had connections with the pharmaceutical companies producing the disease modifying drugs.

Although I was still cautious, in early 2010 I put myself on the waiting list for treatment at the Euromedic clinic in Katowice, Poland (http://www.euromedicpoland.com/index.php?setlang=eng ). They are the most respected
and most experienced practitioners in this field.

Due to the length of the list the expected wait for treatment is 1 year. There was also no deposit to pay so I was not committed to proceed even when my name was called. This gave me the time and space to give it lot of consideration, to evaluate more research and read further reports from medics and MS sufferers who had undergone the treatment.

When I got a call from Euromedic earlier than expected in December 2010 I decided that I was ready to go ahead with the treatment and transferred the £6000 fee. This included everything except flights.

On arrival in Poland my wife and I were collected from the airport and taken to a 4 star hotel where would be staying for 6 days. It included a clean and very comfortable room, and a substantial buffet breakfast.

On the first day after arrival I, along with 5 others, were taken for an eye and MRI examination. We were due to have the treatment on the same day and quickly developed a camaraderie that helped calm our nerves.

On day 2 we had a Doppler scan followed by the CCSVI procedure itself. Everything was monitored by an independent Neurologist, which helped to put my mind at rest.

The treatment itself was relatively pain free and took no longer than 30 minutes.

Results of the scan showed my veins were significantly restricting the blood flow from my brain and I had a malfunctioning valve on one side. The doctors inserted a balloon via a catheter and widened each vein so that my blood could circulate freely.

A couple of the other patients needed a stent inserted as their veins were in a much worse condition. Even though some in the medical profession believe that CCSVI has nothing to do with MS, I was and am glad that I had my veins unblocked. All that trapped blood in my head couldn’t have been doing me any good.

We slept overnight in the hospital and returned to the hotel for a day of relaxation. I wasn’t knocked off my feet and spent part of the day exploring the town and some of its café’s.

Two days after the treatment I went for the scheduled check up Doppler examination and was pleased that the scan revealed that my veins had remained open and my blood was circulating freely. The next day we headed home to the UK. I had a small amount neck pain for about 3 weeks, but did not need to take any painkillers.

I was really impressed by everyone working for Euromedic. The admin staff, drivers, nurses and doctors all spoke excellent English, were professional, polite and very supportive.

I hope that because CCSVI was diagnosed, the Liberation treatment will contribute to prevent further progression of my MS symptoms. I’ve had no relapse or serious fatigue since and continue to be hopeful that this, adhering to the Best Bet Diet and taking Copaxone will give me the best chance possible.

An MS nurse once told my wife that in her experience, if you don’t use it, you lose it, so I will also continue swimming 3 times per week to keep myself in shape.

-------------------
click here to get mentored

My MS Story

2011-04-26T06:35:00.000-07:00

Hi my name is Sharon, at the point of writing this I am 44, I have been married for 22 years, I have a daughter who is 11 and I have had MS for approximately 2 years.

I was born into a very athletic family, my mother was an Olympic athlete and my father was a middle distance runner, I was raised on a track. Both parents were absolutely obsessed with athletics and have remained athletic coaches well into their retirement.

We lived, ate, and breathed athletics, fitness and a healthy diet.

When I was 14 I managed to extract myself from their obsession, it was not my dream to be the fastest runner on the track, or how many miles I could run in a week at “x” minutes per mile. Nor was I interested in watching it on the TV.

Actually it really annoys my parents to this day that I do not own either a tracksuit or a pair of trainers … well I was always a little rebellious!

I continued to be fairly active but doing all the things I wanted to do – aerobics, dancing, horse-riding and I even tried rock-climbing in Wales (once).

I met my wonderful husband when I was 16 (and we have had a very happy marriage). It was in my late teens that I began to have problems with my lower back and knees, I was diagnosed with mild hip-displacier … I now had a very good reason to never run again.

Unfortunately it meant even low-impact aerobics was out of the question. So sport and I parted friends, I wasn’t that disappointed!

My daughter came along when I was 33 and despite the long nights of sleep deprivation, severe back ache from constantly picking up a small child I showed no signs of MS, I had a normal labour/delivery without any painkillers or intervention.

The MS started a couple of years ago when I was about 41 or 42, my first sign of it was constipation, poor memory and I just felt odd.

I had a horrible feeling of foreboding, like the bubble was about to burst on my world, I couldn’t understand why and I couldn’t shake that feeling.

About 6-12 months later we were on holiday in Disney, Florida and my back started hurting (hardly surprising given the dodgy hips and all the walking around the Disney parks). Then my right foot started fuzzing (a bit like pins and needles), I also started to feel a little shaky and vulnerable but thought nothing of it (other than, what an unfit and lazy person I had become).

It became so bad that my husband ended up pushing me around in a wheelchair, well I was absolutely mortified, but my back was excruciating and I was having trouble picking my feet up. At this stage I thought that I had just trapped a nerve or something.

I visited my GP and I think he was suspicious but there were so many other more simple things this could be, I had physio and x-rays etc, things started to improve.

One year later, and I have to point out I was very stressed. We had the builders in and my daughter was just about to sit the 11+, there was a lot of upheaval at the time and decisions needing to be made.

I got up from the sofa and thought my leg felt funny, went to use the toilet and literally nearly scolded myself on the toilet seat (my right side felt hot and my left side felt cold when I sat down), very strange.

That foreboding feeling hadn’t gone.

Over the next few days I became semi numb down the right side, a tight band of intense numbness around my waist, my right foot was tingling, and both legs felt like they were running on 10% power, I had slurred speech and the worst fatigue I had ever felt.

After the usual tests of MRI, lumber puncture etc I had a confirmed diagnosis of relapse and remitting MS. I was literally devastated, this sort of thing happened to other people.

I was raised to be fit and healthy, I have always eaten loads of fresh fruit and veg, I don’t smoke, I like my wine but I don’t drink excessively, I’m not overweight, I have never taken drugs and I don’t do “ill”. This should really happen to someone who abuses their body surely!!

Apparently not!

Well it’s been a year since my diagnosis and life has calmed down now, I am not bursting into tears every time I think about having a “chronic illness”.

I am living a relatively normal life. I have learned to manage my energy – on bad days when I have fatigue I rest, on good days I go out for a 2.5 mile walk (I would to more but the dodgy hips won’t allow it), I do the housework, feed the family, go food shopping, throw dinner parties, see friends. I had to have a hysterectomy 9 months ago and I didn’t suffer a major relapse (brilliant!) I just got a bit fatigued, who doesn’t after a major op.

I have got some permanent damage from the major relapse last year: a fuzzy right foot, 5% numbness from the armpit down on the right side, constipation, cognitive thinking and memory issues - but you learn to put up with it. It’s not all negative, it has given me a wonderful gift of living in the “now”, not taking life for granted, appreciating what you have.

I have been truly blessed to have such wonderful family and friends who support and help me when I’m down. But I have made a promise to myself, my daughter will never ever be my carer, she will have her own life to lead no matter how bad it may get for me.

The way I look at it is … MS is like an unwelcome visitor, when it’s here you treat it with the utmost respect but hope that it will soon be gone, and when it’s gone you breathe a huge sigh of relief, pour yourself a nice glass of wine, and carry on as normal.

In fact a friend once said to me that now I have MS my days of wearing high heels are over, oh no not me, I went straight out and purchased a very bright red pair of high-heels and a pair of leopard-print stilettos. I may only wear them going out for dinner, but I still wear them.

I told you I was rebellious!

------------------------

click here to get mentored

multiple sclerosis community | Multiple Sclerosis Products

2011-01-12T12:08:00.003-08:00

Click here for MS clothing

multiple sclerosis community | Get Mentored Today

2011-01-12T12:02:00.001-08:00

Mentoring is a term that is used to describe the process by which one person enables another to grow and develop.

To me this sounded like what friends do for each other.

Escape Café is a group of friends that all happen to have MS.

We chat, share experience and cups of tea or coffee, and support each other through the sticky patches in life.

Between us we have a great deal of experience in living with MS, the challenges it brings, as well as the physical effects impacting your life.

The emotional, financial, relationship, work and family responsibility stuff can be pretty difficult. We know a bit about all this. The coping strategies, practical knowledge and ideas for being nice to yourself (very important) are our stock in trade.

So, if you are thinking of needing mentoring and support, live anywhere near us and would like a mentor, a friendly companion alongside you as you negotiate the challenges and tribulations of living with MS, please contact us by email:

akrajewska@hotmail.com

multiple sclerosis community | chatroom

2011-01-07T18:05:00.001-08:00

Get multiplesclerosis chat group | Goto multiplesclerosis website

multiple sclerosis community | resources online

2011-01-07T17:41:00.000-08:00

http://www.msrc.co.uk/

The MS 24-hour Telephone Counselling Service

0800 783 0518 then press option 1

http://www.nhs.uk/

If you are feeling unwell now, call us on 0845 4647 - we are open 24-hours a day.

You can also call us on this number if you have a non-urgent medical query, or would like information about another health related issue.

multiple sclerosis community | articles

2011-01-07T17:26:00.000-08:00

BMJ Group Medical Reference Introduction

What is Multiple Sclerosis?

How Common Is It?

What Are The Symptoms?

Current Diagnosis

Questions You May Have

Is Treatment Available? (Part 1)

Is Treatment Available? (Part 2)

more articles...

multiple sclerosis community | latest news

2011-01-07T17:15:00.000-08:00

multiple sclerosis community | treatment part 2

2011-01-07T17:02:00.000-08:00

BMJ Group Medical Reference

(continued)

Treatments to help symptoms during a relapse: Treatments that are likely to work

Steroids: These come as tablets or injections. Examples include methylprednisolone (brand names Medrone, Solu-Medrone) and prednisolone. More...

Treatments that need further study

Plasma exchange: This treatment takes out a part of your blood that causes inflammation. More...
Natalizumab: This medicine is usually used to prevent relapses, but it's also been tested as a way of treating symptoms during relapses. The brand name is Tysabri. More...
Cannabis: Cannabis is usually illegal in the UK, but a spray form (brand name Sativex) is available from doctors. More...

Treatments to help tiredness: Treatments that need further study

Amantadine: You might be treated with these capsules if your MS is making you very tired. The brand name is Symmetrel. More...
Changing your lifestyle: This means making certain changes in everyday activities to help you have more energy. More...
Exercise: This aims to help you feel less tired by making you fitter and stronger. More...
Modafinil: These tablets (brand name is Provigil) may make you feel less fatigued. More...

Treatments to help muscle spasms: Treatments that need further study

Baclofen pump: This pump is put in your back, under your skin. It pumps baclofen onto the nerves from your spinal cord. The brand name of this type of baclofen is Lioresal Intrathecal. More...
Botulinum toxin: Injections of botulinum toxin are given into the muscles around your hip to help relax them, so you can move your legs more easily. More...
Gabapentin: Gabapentinis an anticonvulsant drug that is normally used to treat epilepsy. Some people with MS find that it helps their pain, especially pain from muscle spasms. Its brand name is Neurontin. More...
Medicines that relax your muscles: These include baclofen tablets (brand name Lioresal) and tizanidine tablets (brand name Zanaflex). Researchers have also looked at how cannabis can help. More...
Physiotherapy: This therapy aims to loosen up your muscles so they're less stiff. More...

Treatment by a team of specialists: Treatments that need further study

Rehabilitation in a clinic: This is a programme to check and treat all your symptoms during regular visits to a clinic. More...

Rehabilitation in hospital: This is a programme to check and treat all your symptoms while you stay in hospital. More...

Other treatments

Your doctor might suggest some of the treatments listed below for MS. We haven't looked at the research on these treatments in the same detail we have the other treatments on our site. But we've included some information because you may be interested in them.

You can click on the links below to find out more.

Benzodiazepines are used for muscle spasm.
Deep brain stimulation is used for relieving muscle twitching and shaking.
Linoleic acid is used to slow the progress of MS.

Citations

1 | 2

Last Updated: April 16, 2010

This information does not replace medical advice. If you are concerned you might have a medical problem please ask your Boots pharmacy team in your local Boots store, or see your doctor.

multiple sclerosis community | treatment part 1

2011-01-07T17:01:00.000-08:00

BMJ Group Medical Reference

Introduction

If you have multiple sclerosis (MS), the nerves in your brain and spinal cord slowly lose their coating. Over time, they become damaged and may stop working properly.

At present, there's no cure for MS. But you can have treatments to improve your symptoms, slow down the disease and help you keep living a full life.

Doctors can't say for certain what course your MS will take, so it's hard to know what treatments you'll need. A lot depends on which type of MS you have (for more, see Types of multiple sclerosis).

Key points about treating multiple sclerosis

Some drugs slow down the progress of your MS and reduce the number of relapses you have. These include interferon beta, natalizumab, glatiramer acetate, and immunoglobulin.
Other drugs help ease your symptoms during a relapse. These include steroids such as methylprednisolone.
Some drugs are given for specific symptoms that may be bothering you, either during a relapse or all the time. These include amantadine for tiredness and baclofen for muscle spasms.

You'll probably need different treatments for MS during your lifetime. For more, see How multiple sclerosis is treated. The National Institute for Health and Clinical Excellence (NICE), which advises the government on health care, has made recommendations about how MS should be treated. You can read their recommendations at http://guidance.nice.org.uk/CG8.

If you have the relapsing-remitting type of MS, it can be hard to tell when you should start taking drugs for it. For more, see When to start treatment.

Treatment of multiple sclerosis

Which treatments work best? We've carefully weighed up the research and divided the treatments into the following categories. You can find out more about each treatment by clicking on the links below.

For help in deciding which treatment is best for you, see .

Treatments to reduce relapses and disability

Treatments that are likely to work

Glatiramer acetate: You might have injections of glatiramer acetate if you have relapsing-remitting MS. The brand name is Copaxone. More...
Interferon beta: You might be given injections of interferon beta if you have relapsing-remitting or secondary progressive MS. The brand names are Avonex, Betaferon, Extavia, and Rebif. More...
Immunoglobulin: You might be treated with immunoglobulin if you have relapsing-remitting MS. But it's only used if other treatments haven't helped. More...

Treatments that work, but whose harms may outweigh benefits

Azathioprine: You might take these tablets if you have relapsing-remitting MS or secondary progressive MS. The brand name is Imuran. More...
Mitoxantrone: You might be treated with mitoxantrone if you have very active MS. The brand name is Novantrone. More...
Natalizumab: You may be treated with natalizumab if you have bad relapsing-remitting MS that is getting worse. Its brand name is Tysabri. More...

Treatments that need further study

Methotrexate: This treatment isn't usually recommended for MS. But it's been tested for people with relapsing-remitting and secondary progressive MS. The brand name is Maxtrex. More...

1 | 2

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Last Updated: April 16, 2010

This information does not replace medical advice. If you are concerned you might have a medical problem please ask your Boots pharmacy team in your local Boots store, or see your doctor.

multiple sclerosis community | questions to ask

2011-01-07T16:59:00.001-08:00

BMJ Group Medical Reference

Introduction

If you've been told that you have multiple sclerosis (MS), you may want to talk to your doctor to find out more.

Here are some questions that you might want to ask.

What type of MS do I have?
Should I take drugs to try to slow down the disease?
How likely is it that drugs can slow down the disease?
Which drugs do you recommend and why?
How can these drugs help me?
Do these drugs have side effects?
How long should I keep taking them?
What if they don't seem to be working?
What other treatments should I have for my MS?
What treatments can help if I start having trouble getting around?
Will I be able to have children?
Will MS affect my pregnancy and delivery?
Are there any lifestyle changes I can make to help myself? For example, will eating certain foods or exercising help?

Citations

Last Updated: April 16, 2010

This information does not replace medical advice. If you are concerned you might have a medical problem please ask your Boots pharmacy team in your local Boots store, or see your doctor.

multiple sclerosis community | diagnosis

2011-01-07T16:57:00.001-08:00

BMJ Group Medical Reference

Introduction

There isn't any simple test that says you have multiple sclerosis (MS). Because MS symptoms can come and go, it can take time to be sure you have the right diagnosis.

MS is a serious disease. Doctors don't want to tell you that you have it if you don't, or tell you everything is OK only to find that you have MS after all. Unless your diagnosis is very clear, doctors will often wait to see if your symptoms come back before referring you to a specialist and doing a lot of tests.

Seeing your GP

The doctor you will probably see first is your GP. Here is what they are likely to do.

Your GP will probably ask you questions to find out more about your symptoms and if they fit with MS.
Your GP will give you an examination to see if there are any signs of damage to your nerves.
If your GP thinks you could have MS, they should refer you to a hospital doctor who specialises in diseases of the brain and spinal cord (a neurologist).^[1] If your symptoms are mild and could be caused by something else, your GP may wait to see if your symptoms come back before referring you to a neurologist.^[1]

Seeing a specialist

You should be able to see a neurologist within six weeks of being referred by your GP.^[1] The neurologist may repeat some of the things your GP has already done. Here is what the neurologist will probably do.

The specialist will probably ask you questions to find out more about your symptoms and if they fit with MS.
The specialist may give you a physical examination to see if there are any signs of damage to your nerves.
The specialist may do some tests to see how likely it is that MS is causing your symptoms, or if some other condition might be causing them.

Making the diagnosis

Once the neurologist has the results of all of your tests, they can try to make a diagnosis. If you have MS, these tests should show that:

The coating of your nerves (called myelin) has been damaged in at least two places in your brain and spinal cord
Your symptoms aren't caused by another condition.

If the specialist tells you that you probably have MS, they should take time to discuss the diagnosis with you and give you written information about MS and about local and national organisations that can help you.^[1] You should also be put in touch with a specialist nurse or another health professional who knows about MS, so they can talk about your diagnosis with you and organise any help you might need.^[1]

Citations

1. National Institute for Clinical Excellence. Management of multiple sclerosis in primary and secondary care. November 2003. Clinical guideline 8. Available at http://www.nice.org.uk/cg8 (accessed on 14 December 2009).

Last Updated: April 16, 2010

This information does not replace medical advice. If you are concerned you might have a medical problem please ask your Boots pharmacy team in your local Boots store, or see your doctor.

multiple sclerosis community | introduction

2011-01-07T16:56:00.001-08:00

BMJ Group Medical Reference

Introduction

It's hard to say how multiple sclerosis (MS) will affect you. It affects people in different ways.

A lot depends on which type of MS you have. (To learn more about the different kinds of MS, see Types of multiple sclerosis.)If you have the most common type, relapsing-remitting MS, your symptoms may come and go for many years. There may be periods when you feel fine.
If you have primary or secondary progressive MS, your symptoms won't go away. They will probably continue to worsen.

If your relapsing-remitting MS was diagnosed 10 years ago, your chances of having secondary progressive MS are about 5 in 10 (50 percent).^[1]

Here are some more things we know about how MS may affect you.

The longer you have MS, the more symptoms you're likely to have. You may gradually need more help getting around.
But some people with MS have very little disability even after 15 to 20 years.
Don't assume you'll need a wheelchair. Many people with MS can walk unaided. Others can walk short distances but need walking aids and perhaps a motorised chair or scooter to help them with longer trips.
More and more people with MS are now taking drugs to reduce relapses (flare-ups) and slow the disease. These drugs haven't been around long enough for doctors to see their effects over many years.
MS doesn't change how long you live by much. You'll probably live almost as long with MS as you would if you didn't have the disease.^[2]
It's hard for doctors to say what will happen to you, but certain things about your MS can help your doctors roughly predict what might happen. For more, see What your MS can tell you about your future.

Citations

1. National Institute for Health and Clinical Excellence. Management of multiple sclerosis in primary and secondary care. November 2003. Clinical guideline 8. Available at http://guidance.nice.org.uk/CG8 (accessed on 14 December 2009).
2. Nicholas R, Chataway J. Multiple sclerosis. May 2009. Clinical Evidence (Based on June 2008 search). Available at http://clinicalevidence.bmj.com/ceweb/conditions/nud/1202/1202.jsp (accessed on 15 December 2009).

Last Updated: April 16, 2010

This information does not replace medical advice. If you are concerned you might have a medical problem please ask your Boots pharmacy team in your local Boots store, or see your doctor.

multiple sclerosis community | how common is it

2011-01-07T16:55:00.001-08:00

BMJ Group Medical Reference

Introduction

Multiple sclerosis (MS) is quite common.

About 85,000 people in the UK have MS.^[2]
Around 1 in 800 people in Europe and North America have it. MS is the most common cause of disability due to nerve damage in young adults.^[3]^[4]
MS is usually diagnosed in people between the ages of 20 and 40 years.^[5]
Women are almost twice as likely to get MS as men.^[2]
In the UK, MS is more common in the north of Scotland than farther south.^[1] In Europe, it's more common in northern countries (such as Norway, Sweden and Finland) than in southern ones (such as Spain, Italy and Greece).^[1] No one knows why, but the disease gets more common the farther you go from the equator.
MS may have become more common over the last 20 years. But experts aren't sure if more people are getting MS or if doctors have just become better at diagnosing it.^[6]

Citations

1. Compston A. Genetic epidemiology of multiple sclerosis. Journal of Neurology, Neurosurgery and Psychiatry. 1997; 62: 553-561.
2. Multiple Sclerosis Society. What is MS? June 2009. Available at http://www.mssociety.org.uk (accessed on 15 June 2009).
3. Ford HL, Gerry E, Johnson M, et al. A prospective study of the incidence, prevalence and mortality of multiple sclerosis in Leeds. Journal of Neurology. 2002; 249: 260-265.
4. Sloka JS, Pryse-Phillips WE, Stefanell M. Incidence and prevalence of multiple sclerosis in Newfoundland and Labrador. The Canadian Journal of Neurological Sciences. 2005; 32: 37-42.
5. Weinshenker BG, Bass B, Rice GP, et al. The natural history of multiple sclerosis: a geographically based study. I. Clinical course and disability. Brain. 1989; 112: 133-146.
6. Hauser SL, Goodkin DE. Multiple sclerosis and other demyelinating diseases. In: Braunwald E, Fauci AS, Kasper DL, et al (editors). Harrison's principles of internal medicine. 15th edition. McGraw Hill, New York, USA; 2001.

Last Updated: April 16, 2010

This information does not replace medical advice. If you are concerned you might have a medical problem please ask your Boots pharmacy team in your local Boots store, or see your doctor.

multiple sclerosis community | symptoms of multiple sclerosis

2011-01-07T16:54:00.000-08:00

BMJ Group Medical Reference

You can get many different symptoms from multiple sclerosis (MS).
To read more about the symptoms of MS, click on the links below.^[1]

Everyone who has MS is affected differently.

You might get only some of these symptoms or you might get most of them.
Usually you'll have just a few at a time.
You might have certain symptoms at one time and others at a different time.
Your symptoms can be mild or severe. They might be so mild that you don't notice them, especially at first.
Your symptoms can last just a day or two, or for weeks on end.

The pattern of your symptoms depends a lot on the type of MS you have (for more, see Types of multiple sclerosis).

If you have relapsing-remitting MS, your symptoms will come and go.
If you have progressive MS, you may have more symptoms and they may get better, but they probably won't go away completely.

Researchers now know that a single episode of nerve problems lasting for more than 24 hours can be a lead up to multiple sclerosis.^[2]

This is known as clinically isolated syndrome (or CIS for short).

Your optic nerve might become inflamed (optic neuritis) for a short time. Or you may get inflammation of your spinal cord (transverse myelitis) or a brainstem lesion. Between 3 in 10 and 7 in 10 people who have a single episode of nerve inflammation may go on to have multiple sclerosis.

You don't have to just put up with your symptoms. A lot can be done to help you feel better, so be sure to tell your doctor if you're having any symptoms.

Citations

1. Hauser SL, Goodkin DE. Multiple sclerosis and other demyelinating diseases. In: Braunwald E, Fauci AS, Kasper DL, et al (editors). Harrison's principles of internal medicine. 15th edition. McGraw Hill, New York, USA; 2001.
2. Miller D, Barkhof F, Montalban X, et al. Clinically isolated syndromes suggestive of multiple sclerosis, part I: natural history, pathogenesis, diagnosis, and prognosis. Lancet Neurology. 2005; 4: 281-288.

Last Updated: April 16, 2010

This information does not replace medical advice. If you are concerned you might have a medical problem please ask your Boots pharmacy team in your local Boots store, or see your doctor.

multiple sclerosis community | what is multiple sclerosis

2011-01-07T16:47:00.000-08:00

BMJ Group Medical Reference

Introduction

If you have multiple sclerosis (MS), the nerves in your brain and spinal cord slowly lose their coating. Over time, these nerves get damaged and may stop working properly.

This can affect you in all sorts of ways.

For example, MS can affect the way you move your body. You may at times find it hard to reach out for something or to walk properly.

Key points for people with MS

Some people with MS are hardly affected at all. But the disease is more serious for other people.
The most common symptoms are feeling very tired and weak and having numb or 'tingling' areas.
You may have flare-ups (called relapses) when your symptoms get worse and other periods when you feel fine.
MS affects everyone differently. Just because you have this disease, it doesn't mean you'll be very disabled or need a wheelchair.
There's no cure for MS, but drugs like interferon beta can reduce relapses, slow down the disease and help you stay active.

Your central nervous system

To understand what happens when you get MS and how it's treated, it helps to know a bit about your central nervous system (or CNS for short).

Your CNS has two main parts:^[1]

Your brain controls everything your body does. For example, your brain lets you move your arm to pick up your coffee, speak, recognise your family, think and remember things.
Your spinal cord is the main highway of your CNS. It's the big bundle of nerves that runs down your back from your brain. It sits inside the bones of your spine.

Your brain and spinal cord are made up of billions of nerve cells that share information. The information moves from one nerve cell to another as chemical signals.

Groups of nerve cells have specific jobs. For example, some let you think, learn, remember and plan. Others let you see and hear. And others manage the millions of actions that keep your body working.

Many of the nerves in your brain and spinal cord have a coating called myelin. Myelin is made mainly of fat. It's important because it helps signals travel quickly and smoothly along your nerves.

What happens in MS?

Here's what happens if you have MS.^[2]^[3]

Your immune system normally helps protect you by fighting off infections. But if you have MS, your immune system makes a mistake. It attacks the myelin coating around the nerves in your brain and spinal cord.
This causes inflammation, and the myelin coating may be damaged or even destroyed.
If this happens, signals travelling along your nerves can slow down, get blocked, speed up or get mixed up.
This can affect how different parts of your body work. For example, your brain may send a message to your hand to pick up a cup. But if the signal gets mixed up, your hand may not move the way you want it to. Or the movement may be too weak or jerky for you to pick up the cup.
MS can cause many different symptoms. This is because the symptoms you get depends on where in your brain and spinal cord the inflammation happens. For more information, see What are the symptoms of multiple sclerosis?
The inflammation from MS can come and go. But if it keeps coming back, your nerves may get permanently damaged.

Scientists don't know exactly what causes MS. But a lot of research is going on to try to find out.

Last Updated: April 16, 2010

This information does not replace medical advice. If you are concerned you might have a medical problem please ask your Boots pharmacy team in your local Boots store, or see your doctor.