Introduction

Vascular co-morbidity means that as well as MS you have  hypertension, hypercholesterolemia, diabetes, or heart disease too. It has recently been found that whether present at symptom onset, diagnosis, or later in the disease course, it  is associated with a substantially increased risk of disability progression.

Who found this ?

Published in Neurology. 2010 Mar 30;74(13):1041-7. was a study by

Marrie RA, Rudick R, Horwitz R, Cutter G, Tyry T, Campagnolo D, Vollmer T.

Health Sciences Center, Winnipeg, Canada.

Background

On October 29 in Neurology, researchers outlined how co-morbidities may contribute to diagnostic delay in multiple sclerosis (MS) and increased disability at diagnosis. But Vascular co-morbidity adversely influences health outcomes in several chronic conditions so it became a question that needed to be answered about MS.( Vascular co-morbidities are common in multiple sclerosis (MS), but their impact on disease severity was unknown).

It could be that these “vascular co-morbidities” may contribute to the poorly understood variability in MS disease severity. So,  A total of 8,983 patients with MS enrolled in the North American Research Committee on Multiple Sclerosis Registry participated in this cohort study.

Method

Time from symptom onset or diagnosis until ambulatory disability was compared in these 8933 patients with or without vascular co-morbidities to determine their impact on MS

Models were adjusted in the analysis for sex, race, age at symptom onset, year of symptom onset, socioeconomic status, and region of residence.

Results

Participants reporting one or more vascular co-morbidities at diagnosis had an increased risk of ambulatory disability, and risk increased with the number of vascular conditions The median time between diagnosis and need for ambulatory assistance was 18.8 years in patients without and 12.8 years in patients with vascular co-morbidities.

CONCLUSIONS

Vascular co-morbidity, whether present at symptom onset, diagnosis, or later in the disease course, is associated with a substantially increased risk of disability progression in multiple sclerosis. The impact of treating vascular co-morbidities on disease progression deserves investigation as treatment of vascular co-morbidities may represent an avenue for treating MS

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Disabled people are rarely touched in a loving way or thought of as sexually desirable yet they have the same need for a sexual life as everyone else. Recently an inspiring radio documentary was put together by ABC Radio National in Australia and presented by John Blades, himself an MS sufferer and radio presenter. It was one of the 360 Radio documentaries.

“In this confronting program John Blades, who has a major disability himself, talks to sex workers about why they work with disabled clients and the importance of touch to every human being.”

He also meets other people with disabilities; Gary who has burns to 60% of his body and finds that being touched by his wife on his burnt skin makes him feel desirable; and Caitlin, who has cerebral palsy, and whose first sexual experience was with a sex worker.

The programme is an hour in length but very easy to listen to. Tune in here and listen to the 360 documentary – disability and sex

Warning: There is material of an adult nature in the program

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There are about 80 different types of sleep disorders, and about 25% of people (that’s 70 million Americans) suffer from them.  The inability to fall asleep or to stay asleep, called insomnia, is the most common. Multiple Sclerosis (MS) is well represented in the Sleep Disorders department.

On her “good” nights, she awoke as frequently as every hour; on the worst ones she lay awake until breakfast.

Sleep problems are common in MS, but are somewhat under recognised. In a study from the UK, as many as half of the patients with MS (of varying severity) studied had some sleep-related problem. The commonest was insomnia, usually related to spasm, pain, immobility, bladder problems, or medication.  It has also been felt that periodic leg movements may be more common in MS. Besides these relatively common problems, there are more than a few case reports of some unusual or rare sleep disorders in MS.

MS patients have pain, depression and anxiety all of which can cause insomnia However, most Insomnia is Psychophysiological- that is related to a pattern of sleep difficulties that is not specifically due to a physical trigger or a recurrent identifiable cause. This is true in MS too.

Sleep disorders are twice as prevalent among MSers than non-MSers. These disorders can be sleep-related movement disorder, nocturia (frequent visits to the bathroom), tinnitus (ringing in the ears), obstructive sleep apnea or OSA (tissues of the throat interfere with breathing), central sleep apnea or CSA (brain slows down regulation of breathing), REM sleep behavioural disorder (person acts out dreams during sleep), and narcolepsy (falling asleep unexpectedly and at inappropriate time). Throw in the usual MS symptoms, such as numbness, tingling, spasms, pain, and it’s no wonder that sleep becomes an issue for many of us.

Sometimes, unco-ordination in breathing, which is more common in MS than in those without it, can worsen the upper airway obstruction which is the major cause of OSA. In MS, the central control of breathing can be impaired due to plaques in the brain stem. This can cause Central Sleep Apnea. MS patients, like many others can have combinations of OSA and CSA when tested in an overnight Polysomnogram (PSG).

All of these can be operative in Multiple Sclerosis, the most common being OSA which is the leading cause of Excessive Daytime Sleepiness in the vast majority of people with or without a concurrent disease.

Improving your sleep

Is there anything we can do to make these sleep problems better? Try some of the following tips.

• Do not nap during the day.
• Do not consume caffeine within 4-6 hours of bedtime
• Do not smoke or use nicotine products close to bedtime or during the night.
• Do not drink alcoholic beverages within 4-6 hours of bedtime.
• If the need to use the bathroom is keeping you up at night, reduce fluid intake in the evening. It is still important to drink the recommended amount of fluids during the day. Also go to the bathroom immediately before you go to bed.
• Do not go to bed hungry or soon after a heavy meal. If you are hungry, eat a light snack or drink a glass of warm milk.
• Exercise regularly, preferably during the day. Avoid vigorous exercise 3 hours before bedtime.
• Set your alarm to wake up at the same time every day, even on days when you’re off work and on the weekends.
• If you have sleepless nights and lie in bed until it seems like the sun is coming up get back up if you have not fallen asleep after 10 to 15 minutes. Find something to do that is relaxing to you, such as putting together a puzzle, reading, or writing a letter to a friend.
• Rather than watching TV, which is a passive activity, do something active so that natural tiredness can build up–although you should avoid physical activity when trying to become sleepy.
• I’ve been told “Remember that your bed is only for sleeping. Any of the above activities should be done in another room, not your bedroom. Return to the bedroom only when you feel tired.” But personally I much prefer to stay warm in bed as I try things to tire me out.

Finally these relaxation techniques can help you fall asleep or improve your sleeping patterns:

• Repetitive mental exercises. Close your eyes, and silently repeat a word or short phrase. Let your breathing become slow and steady. Repeat the phrase for 10 minutes until you feel more relaxed.
• Visualization. Imagine that you are in a peaceful environment, such as lying on a beautiful beach, relaxing and taking in the rays.
• Progressive muscle relaxation. You can mentally put each part of your body to sleep by tensing and relaxing your muscles. People with spasticity should be careful because this exercise could trigger muscle spasms.

Here’s hoping there’s a way to make things better. If you have your own technique please leave a comment and share it with others.

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One of the first things is that a chronic illness does not conform to most people’s prior experience with illness. MS does not go away. Nothing is the same and you can’t tell how different it is going to be from one day to the next. This unpredictability makes it difficult to make plans and decisions.

MS changes us. It causes us to rethink our plans, goals, dreams and aspirations: some changes may be relatively small but some are very significant, and affect several areas of our life.

Let’s take an apparently simple thing like socialising

MS can complicate socialising. The practical difficulties of getting out and about can affect friendships. The different lifestyle led by a person with MS may mean that some friendships are lost or changed, and there may be fewer opportunities to make new friends.

“You feel like being around people but find it hard. I can tolerate a couple of people but if I go into a room of 30 to 40 people I just feel like I need to get out of there and go home.”

We all have a sense of self, of “who we are”. It can refer to how we perceive ourselves, the kind of work we do, the activities we are involved in, the friends we have, and our place in a family that we care about. MS can play with this perception.

MS is not going to kill you but it is important to go through the grieving process of dealing with loss of the life you once had. Take control of the uncontrollable. Now this sounds la bit like holding the w aves back from the shore but  there is a lot you can do to live moiré comfortabley with this unpredictable disease.

• Educate yourself :The more you know the better prepared you are
• Create your support networks : you don’t have to do it alone
• Start your treatment early: There is no cure but several medications have been shown to slow the disease progression.
• Learn your own cues: For example does heat make your symptoms worse? Can you concentrate better earlier in the day? Are you sensitive to cold? When is your energy ay it’s best? Does it take you longer to do things than it used to? Share all these facts with those around you as nobody is a mind reader
• Always have a back-up plan: Every big plan should have a backup. One day you’re raring to go and the next you’re weighed down. Get into the habit  of thinking of alternatives just in case fatigue kicks in, symptoms flare up or a relapse happens.
• Tap that ang3er and frustration: Just reorganising your kitchen to make it easier for yourself  or do something big like advocate for the rights of peoples with disabilities  or add a comment to this psot and share with the others who come here, It all makes a difference

Summing Up

After being diagnosed, and as you manage your MS, it may be that your emotions and confidence are all over the place. It is very important to have good support networks to help you adjust, and to help you create new plans, goals and aspiration that are compatible with having MS.

The best piece of advice is don’t go it alone. Talking to others is crucial. It is important to have someone with a ready ear and an understanding of what you are going through.

Likewise, it is important that people with MS keep communication open between themselves, and others affected by their condition. This includes family, friends, medical professionals and caregivers. Effective solutions often depend upon a united approach to resolving the problem.

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I find it both challenging and inspiring, take a look

You can see it here  Jennifers Hub

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Introduction

As we know Multiple sclerosis is a common neurological disease that affects 1 in 1,000 people, most commonly young women, although men too to a lesser extent. The typical disease progress includes attacks and remissions with slowly progressing disability. Current therapies can prevent the appearance of new events, but they have much less effect on disease progression and serve mainly to moderate the initial relapsing-remitting phase.

May 15th 2009 saw a new review published from Oxford University by Lars Fugger, Manuel A. Friese and John I. Bell. In it they describe the current and new approaches that can be applied to define the functional role of the known genes involved in multiple sclerosis but also point out that environmental factors have a bearing on the function of the genes.

Environmental factors

Unfortunately, these environmental factors have proved to be even more elusive than the genes. Why do different areas of the world have a different prevalence and incidence of MS ? Could this be climate? Diet ? Genetics ? Lifestyle ? Infections ? What could these infections be ? Numerous viral and bacterial infections are potential candidates such as those found in the respiratory airways and gastrointestinal or urinary tracts as they are often associated with relapses, but no single infection has been consistently associated with disease.

We do not know how so many different infections could have a role in MS and how they might interact with genetic risk factors but, it is also important to try to understand how non-infectious risk factors, such as sunlight, may interact with genetic risk factors.

Asking the questions

The biggest challenge will be to use genetic information to ask questions about the environmental factors that interact with gene pathways and contribute to disease development. The identification of the exact disease susceptibility gene does not necessarily define the pathway involved in disease development.

The insights gained from functional studies may help the study of environmental risk factors by using methodology that goes well beyond the conventional approaches of population epidemiology. The improving capacity for modelling and simulation using genetic data may lead to the identification of the additional environmental factors that interact with genetic factors to cause disease.

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I first discovered I had a lot of “pseudo flare ups” when my MS nurse suggested I might have a UTI (urinary tract infection) Indeed I am very prone to UTIs but I had had no symptoms. No pain, no burning, no irritation no frequent urination. Sure enough that’s what it was and now I permanently have a supply of antibiotics on hand and dip sticks to test my urine if I’m suspicious. , Many people with MS suffer from chronic UTIs so drink plenty of water as a preventative (at least a litre(quart) a day or 2  in hot weather), and seek medical help as soon as an infection takes hold, to prevent a full-scale launch of MS symptoms. Personally it often takes a while for this to dawn on me as my UTI is asymptomatic but I get there in the end !

“Did you know that people with MS must also contend with pseudo flare-ups? Well we do. As if getting use to the real thing isn’t enough pressure to deal with, we quickly find out we must also contend with the false-positive nature of MS.”

Frequently an infection of any kind can trigger what is known as a “pseudo” or “fake” flare up but there is nothing “fake” about the MS symptoms. Furthermore it seems common that infections are asymptomatic, (apart from the MS symptoms) It is important to get to the root cause or causes so that your  symptoms can settle back down again.

For instance stress is a well know cause of exacerbations or “fake” exacerbations. I find that if I have a run in with my former husband you can get bet I will have a pseudo flare-up and if I’m on holiday in a hot climate you can be sure I’ll have a pseudo flare-up but that usually ends as soon as I’m in and air conditioned environment or have found another way to cool down.

You can read a bit more on Jen’s Hub page here http://hubpages.com/hub/How-to-Distinquish-Between-a-Real-Flare-Up-and-a-Pseudo-Flare-Up

I’d love to hear your comments on what causes a pseudo flare-up for you

Kath

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For many, the emotional and cognitive effects of Multiple Sclerosis represent its greatest challenges. Whether a person with MS will experience these problems cannot be predicted from age, level of physical disability, duration of MS, type of MS, or intelligence tests. Up to half of all people with MS will have some degree of cognitive disruption Fortunately only 10% of people with MS will have cognitive problems that significantly interfere with everyday activities. For those 10% it is a frustrating or even devastating change in their normal thinking process.

MS may be accompanied by a variety of emotional reactions and people with MS face some very special challenges. However, like everyone else, they are trying to do their best to cope with what life has sent them. In most instances, they cope very well and often are stronger for having met these challenges.

Cognition

The areas of cognitive functioning that are most commonly affected in MS include the following:

• Memory
• Visual spatial abilities
• Attention and concentration
• Word-finding
• Speed of information processing
• Abstract reasoning and problem solving

Typically, MS affects some cognitive functions but leaves others relatively intact. For this reason, MS is not likely to lead to the sort of global cognitive decline seen in Alzheimer’s disease. People with Alzheimers, for example, have difficulty storing information from moment to moment. People with MS tend to have a difficulty with retrieving that information. But as MS can affect any part of the brain, almost any cognitive function can be impaired. In some cases, MS-related cognitive changes can be very pervasive, rendering the individual unable to deal adequately with day-today tasks.

There are some common misunderstandings about cognitive dysfunction in MS and the following is by way of reassurance :
• MS does not equal Dementia (as mentioned above)
• MS does not mean that intelligence has declined.
• MS is not a mental illness (although some people with MS experience depression, and this requires medical and psychiatric treatment).
• Cognitive functioning can be assessed
• Cognitive problems can occur at any level of physical disability

Cognitive changes can have a significant impact on one’s ability to live and work. Family members are often unaware that MS can cause cognitive problems and this misunderstanding can result in anger and confusion.

Many factors will determine your response to cognitive problems, including the impact of the disability on your normal way of life, previous ways of coping, and the support you receive from others. You and your carers should remain vigilant as to cognitive changes and if this happens it is wise to obtain a professional evaluation to clarify the nature and cause of the problems.

What can you do?

The health professionals who can help are neuropsychologists, occupational therapists, and speech language therapists. Keep this in mind as often input is needed from a professional trained to assess and treat people with cognitive problems.

As the impact of cognitive changes can be stressful, it may also be helpful to talk to a counsellor or your doctor about how you are feeling.

Hints and tips

• Keeping to a routine is important, as is being consistent. For example, when you open the door to your house, put your keys in the same place every time.
• It might help to get an ‘organiser’. Set it up with sections for everything that affects your day-to-day living. Sections for appointments, for phone numbers, addresses etc.
• Using mental pictures or images to remember something can be a good technique to aid memory.
• Having people repeat or write down instructions often helps. It is important that the person conveying the message, instructions or directions to you knows that you have understood. Repeat it back to the person, and ask for clarification if necessary.
• Keep your mind as active as possible. Reading, doing crosswords and puzzles are good ways of keeping mentally challenged, and it is best to find activities that suit you. However, you do need to be aware of your energy levels and be careful not to tire yourself out.
• Regular rests to recharge your brain (and body) become important when you have MS. Use energy conservation and work simplification techniques to ensure the best possible use of your physical and mental energy. Be aware of and alert for mental fatigue (a decline in cognitive performance following a task requiring continuous mental effort).
• It is also best to avoid noisy and/or distracting environments as these can make it difficult to concentrate.
• It is also important when learning a new task that you allow plenty of time to learn it. If you are having trouble, shift your attention to another task and come back to it later.

Finally
It is important that you know that you are not going crazy, that many people with MS experience similar problems with their thinking and memory. In particular, it is important for friends and family members to be aware of the relationship between MS and cognitive dysfunction.

Click Here to take Cognition Survey

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For some people with MS, medicines can provide complete relief from pain,but many pain sufferers do not achieve adequate pain relief by pharmacological means. Fortunately, a number of non-pharmacological approaches can be used that have been proven to be effective in other groups of people with chronic pain.

The biopsychosocial model of pain

The experience of pain is very complex, involving not only the body but also the mind. Current thinking is that chronic pain is best understood from a biopsychosocial perspective, which recognises the importance of the underlying biological basis of pain (for example, nerve damage due to MS), but  also acknowledges that psychosocial factors may have a significant impact on the experience of pain and its effects on life.

Some of these factors include one’s emotional reactions to pain and how one thinks about or deals with pain. The biopsychosocial model has led to treatments that are effective for decreasing pain severity and the negative impact of pain.

People with pain sometimes worry that others think that their pain is “not real”, exaggerated, or a sign of mental illness. On the contrary, chronic pain is a serious condition that is “in one’s head” only because pain signals are processed in the brain. Advances in brain science have confirmed that psychological factors such as one’s emotions or stress can affect physical health, including pain. Living with MS and pain can also cause chronic stress. The brain (mind) and body influence one another in ways that science is just beginning to understand.

Relaxation training

Pain and other stressors often result in a natural response of repeated and prolonged tensing of muscles, which tends to worsen pain. Research has shown that one of the best ways to counteract the tensing effects of pain and stress is to practice various forms of relaxation. There are many methods to achieve relaxation – deep breathing, baths, music, meditation or prayer for example.

Some relaxation strategies can be tried without instruction, whereas others may need to be learned under the guidance of a professional.

People vary in their ability to relax, so trying a variety of relaxation techniques may be necessary to find what works best. Relaxation exercises may also work best when paired with other coping strategies.

Deep breathing is the basis for many relaxation techniques, so it is often a good skill to learn first.

It is generally done lying down or sitting in a comfortable chair. The basic method involves taking a deep breath through the nose, trying to cause a rise in the abdomen, followed by a brief pause, and then exhaling through the mouth. To heighten the sense of relaxation, some people say calming words to themselves, such as “relax” or “peace” on each exhalation. To achieve maximum benefit, deep breathing should be practiced for at least five minutes, several times per day.

One technique that has been used for some time iscalled Binaural Beats.

Two tones at slightly different frequencies are presented separately, one to each of a subject’s ears, using stereo headphones. A beating tone will be perceived, as if the two tones mixed naturally, out of the brain.

These two frequencies, when mixed together, result in a different frequency which aligns your brain waves into a different way of thinking. This is often called brainwave entrainment.

I have used this myself to get a better night’s sleep with amazing results

12 Amazing Binaural Beats Audios

Self-hypnosis training

Research published over the past decade supports the benefits of self-hypnosis training for helping individuals better manage both acute and chronic pain. Like relaxation training, self-hypnosis is a way to use the power of the mind to manage pain by altering the experience of pain.

This may include distracting from pain, focusing on more pleasant sensations, or even experiencing pain as decreasing or going away. Contrary to how hypnosis is portrayed in the media, people using self-hypnosis always remain in control of themselves. Training in self-hypnosis should be done with a professional experienced in its use for pain. It can often be learned in only a few sessions and should be practiced regularly to maintain benefits.

Like medications, self-hypnosis training rarely, if ever, eliminates pain completely; nor does it benefit everyone who tries it. However, there appears to be a subgroup of individuals, including those with MS, who report substantial decreases in pain severity following self-hypnosis treatment and who are able to maintain this improvement over time. In addition, unlike some medications, the “side-effects” of self-hypnosis training are positive. For example, in a study that included people with MS, 40 different benefits of self-hypnosis were identified in addition to pain relief and no negative effects were reported.

Self Hypnosis Questions, Answers, and MP3s

Cognitive behavioural therapy

Numerous studies indicate that the way people think can have a big impact on how much pain they experience, how they deal with pain, and how much pain interferes with their lives and functioning. Things people do to cope with their pain can also be helpful (for example, using relaxation techniques) or unhelpful (for example, using alcohol excessively to relieve pain).

Cognitive behavioural therapy (CBT) involves teaching people how to change their pain-related thoughts and behaviours in order to reduce pain and its associated suffering. In CBT, individuals are taught to examine the thoughts they have about pain, determine whether these thoughts are helpful or unhelpful, and replace any unhelpful thoughts with helpful, reassuring ones.

CBT often also includes teaching other pain management techniques such as relaxation training, distraction techniques, or activity scheduling. It typically involves either group or individual treatment by a professional with expertise in CBT, and optimally, pain.

Other psychological interventions

Other psychological treatments may be useful in addressing pain and its impact, including support groups, pain education, and psychotherapy. Treating depression, when present, is recommended, given that depression and pain often impact one another. Physical exercise (for example, walking, swimming, or yoga) often has beneficial effects not only on a person’s physical condition but also on pain and stress.

How to find help

Unfortunately, many people with MS pain are offered these treatments only after all medical treatments have been tried and failed. Psychological interventions should be considered early, soon after the development of pain, along with other appropriate and effective treatments such as medications or rehabilitation. The sooner these treatments are used, the more likely they are tobe of benefit. For those who do not have access to specialists in the psychological treatment of pain, text and web-based resources may be available from your national MS society, or via your nurse or doctor

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From the U.S. Department of Health and Human Services,

Some medications for multiple sclerosis are not recommended for pregnant or breastfeeding women. So, after they have the baby, women must choose between breastfeeding and going back on their medications.

In one small study, though, women with MS who breastfeed exclusively for two months had a lower risk of MS attacks. Annette Langer-Gould of Kaiser Permanente Southern California:

[Annette Langer-Gould speaks] “While 87 percent of the women who did not breastfeed exclusively had a relapse in the year after giving birth, only 36 percent of the women who did breastfeed exclusively relapsed in that postpartum year.”

Langer-Gould says waiting two months to resume medications may be a good idea, but more research will be needed to establish that.

The report in Archives of Neurology was supported by the National Institutes of Health.

Learn more at hhs.gov.

HHS HealthBeat is a production of the U.S. Department of Health and Human Services. I’m Ira Dreyfuss.

test

Last revised: June, 24 2009

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