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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Interestingly the most common areas for this type of pain are the face, neck

and torso so let’s start at the top with TGN

Trigeminal Neuralgia

TGN is an excruciating, sharp, shock-like pain in one side of the face, lasting seconds to minutes and often repeated; may be triggered by speaking or a touch. It usually settles spontaneously by itself over several weeks. Unfortunately many of the side effects of the usual drugs mimic the symptoms experienced in MS anyway so it is difficult to tell the cause and it may lead to alarm that the disease is getting worse. To allay these fears I have outlined the usual side effects of each drug,

Usual medications

Carbamazepine (anticonvulsant): Side effects Drowsiness, Dizziness, Coordination difficulties

Phenytoin (anticonvulsant): Side effects Dizziness, Nausea, Insomnia, Uncontrollable eye movements, Coordination difficulties, Slurred speech, Confusion

Baclofen (muscle relaxant): Side effects Weakness, Drowsiness, Dizziness

Gabapentin (anticonvulsant) may also help: Side effects Dizziness, Coordination difficulties, Fatigue

Lhermite’s Sign/Symptom

This is a  brief, stabbing, shock-like sensation that runs from the back of the head down the spine, (like an electric shock) brought on by bending the neck forward. It is not always painful.

Usual medications

Carbamazepine or Phenytoin (see above)

Other treatments

A soft collar may limit neck movement. Most often Lhermite’s symptom disappears spontaneously and medical treatment is not necessary.

Tonic Spasms

These, known as spasticity are sudden and painful muscle contractions, producing stiffness of the whole limb, which can last up to two minutes.

Usual medications

Carbamazepine, phenytoin, and baclofen (see above) and

Clonazepam (anticonvulsant): side effects Sedation, Dizziness

Dysaesthetic Pain in Limbs and Trunk

Dysaesthetic means any impairment of the senses especially the sense of touch

This is a condition in which light physical contact of the skin causes pain; Such as the weight of sheets in bed.  It involves a persistent burning, tingling, tightness, or aching which may be worse at night and after exercise It may be aggravated by temperature and weather.

Patients frequently state that dysaesthetic burning corresponds with what they imagine a hell might be like. Some of the descriptions given by patients include:

- “Like Hell’s hottest knives tearing at my flesh”
- “Like my flesh is being consumed in a fire”
- “Like my flesh is being torn from my body”
- “Like my flesh has been burned off”
- “A pain worse than pain”
- “Indescribable burning”
- “Like an alien pain monster has taken over my body and has ignited my flesh”

Usual medications

Nortriptyline and amitriptyline.(anti-depressants): side effects Dry mouth, Blurred vision, Sedation, Urinary retention

Gabapentin, (see above)

Tegretol (Carbamazepine – see above) and Epilim (sodium valproate – anti epileptic) may also be useful.

Side effects of Epilim nausea, diarrhoea, increased appetite and weight gain, shaky movements, tremor, drowsiness, confusion, temporary hair loss

Other treatments

• Application of cold, pressure stockings
• Capsaicin ointment/cream. Capsaicin is the active ingredient in chilli peppers. It’s what gives chilli peppers their kick. When it is applied to the skin, capsaicin cream has been found to deplete substance P— a neurochemical that transmits pain—which desensitizes a person to pain. Capsaicin cream produces a temporary reduction in pain, so it must be used regularly to provide prolonged pain relief.

Capsaicin can cause an intense burning feeling when it is applied, particularly if it is used less than 3-4 times a day, or if it is applied just after taking a hot bath or shower. However, this side-effect tends to ease off with regular use. Capsaicin cream should not be applied to broken or inflamed skin. Wash your hands immediately after applying capsaicin cream.

In my next article I will be discussing secondary pain in MS.

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Pain is generally not associated with MS but findings of worldwide MS research studies suggest that pain is a key factor in MS, indeed approximately two thirds of people with MS experience pain at some time during the course of the disease; pain is undertreated; and that pain is associated with depression, anxiety and fatigue although not the sole cause of these symptoms.

Although MS pain was first recognised in the 1800s, it was not until the 1980s that the incidence, prevalence and characteristics of MS pain were described.

The severity or frequency of pain varies from person to person. It cannot be predicted by a person’s age, gender, or type of MS. However, the longer someone has had MS, the more likely they are to experience pain as one of their symptoms.

The most common pain syndromes experienced with MS include:

● headache (seen more in MS than the general population)
● continuous burning pain in the extremities
● back pain
● painful tonic spasms (a cramping, pulling pain)

Why does pain occur in MS?

Pain is a sensory symptom directly related to two occurrences – the disruption of central nervous system myelin and the effects of disability.

In other words pain may be directly related to the disease itself (e.g. pain associated with nerve damage), or it may develop because of other MS problems (e.g. pain caused by painful muscle contractions and stiffened joints). Fortunately, most pain in MS can be treated.

When pain is the result of a disruption or alteration of nerve conduction, it is termed neurogenic or neuropathic. Pain caused by nerve damage can range from a mild prickling to severe burning, itching or aching and usually requires different treatment from musculoskeletal pain. In some chronic pain conditions, the constant barrage of pain signals may overwhelm the central nervous system so much that normal sensations such as the stroke of a hand can trigger pain.

Neurogenic pain

Neurogenic pain is described in varying degrees of severity and can be split into two types:
•    Continuous and steady
•    Spontaneous and intermittent,

One large North American study found that half of those reporting pain said their pain was continuous and severe.

Intermittent, spontaneous pain is characterised as shooting, stabbing, electric shock-like, or searing and is often evoked by stimuli that normally do not cause pain, for example touch, the weight of bed covers, chewing or a cold breeze

Steady neurogenic pain is typified by burning, tingling, tight or band-like sensations, aching and throbbing. This type of pain is often worse at night, worse during temperature change and worsened by exercise.

Then there is tissue damage which may result from disability. This can be secondary to musculoskeletal changes in MS due to weakness or incorrect posture for example. If a person walks in a different way than normal then joints may be stressed and become painful as well.

How can MS pain be treated?

Pain management is approached medically, behaviourally, physically and in some cases, surgically. If it is treated with drugs it is always a balance of risk versus benefit. In other words, medication side effects need to be considered and continually evaluated in terms of their impact on a person’s quality of life.

It is not the remit of this article to identify the drugs used.

Emotional Effects

It is important to recognise the emotional effects of experiencing pain and to develop healthy coping strategies.

Some examples are:

•    Learn relaxation and meditation skills.
•    Concentrate on positive thoughts and activities.
•    Talk to a counsellor.
•    Seek assistance from an MS Society Field Worker or an MS nurse.
•    Contact a support group for people with chronic pain.

In addition some suggestions for managing pain include:

•    Exercising gently and regularly, but only within your limits.
•    Modifying your environment (e.g. comfortable bedding).
•    Considering equipment that may prevent pain from being triggered (e.g. a gripping stick to avoid having to reach).
•    Treating flare-ups as they occur – delay can cause problems.
•    Seeing a physiotherapist regularly.

In future articles I will address the current options in treatment of MS pain

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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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The longer I have my multiple sclerosis the more things I discover about the disease and myself! I’ve written articles about the physical side of MS but there is a mental side to the disease, too! I always thought it was a purely physical disease such as taking a person’s walking like my MS has. However, I’m now learning that there are many things that multiple sclerosis can affect in regards to cognitive thinking. It reminds me of the scarecrow in the movie “The Wizard of Oz”. In the movie he wanted a brain and there was also the song he sang titled, “If I Only Had a Brain”! At times I feel that way! My cognitive dysfunction seems to be getting worse.

I want to emphasize that I don’t write my articles about my MS for sympathy or pity. I find that when I write things down it’s cathartic for me. It reminds me that I do have a terrible disease and I shouldn’t be so hard on myself about some things that I do and don’t do. I think it also helps other people with the disease to know that they’re not alone. I think my writing also helps families and friends of people with MS understand the disease a little better! Thanks for reading!

The range of cognitive dysfunctions which can be associated with multiple sclerosis can include.

- verbal fluency and language skills can be affected – intellectual reasoning can be affected – brain fog – poor problem solving abilities – information processing can be slowed – poor concentration – short – inability to learn quickly – poor judgement

It is now known that at least 50% – 60% of people who develop multiple sclerosis will develop some form of cognitive dysfunction as a result. This figure may yet rise as future studies shed more light on the range and extent of cognitive dysfunction associated with multiple sclerosis. In my own case I often refer to myself as a simpleton. I have two college degrees and I’ve owned a couple of small businesses in the last 20 years. I don’t think a simpleton would be able to do that yet I often refer to myself as one. In the 80′s I managed health clubs which took more brains than a simpleton would exhibit. In the past year I’ve also started a new telemarketing business from my apartment. I do telemarketing for three insurance agents, a carpet cleaning company and a handyman business. I get the big picture of what I want to accomplish but sometimes moving from point A to point B is difficult.

However, there are now things that I have trouble doing that once were so easy for me! A couple of examples would be this. I have trouble if someone gives me directions to go somewhere. I don’t ask for north, south, east and west anymore but I ask for left, right and straight! I’ve lived in my little town for 4 years now and I still don’t know if I live on the north or south side of the railroad tracks. I can figure it out if someone asks but only because I know Fargo, ND is to the east. I can be sitting with people I know and I’m always screwing up their names. I know their names but when I’m thinking fast sometimes different names come out of my mouth. Some people that know me just laugh at this but I think some people think I’m a doofus because I can’t remember their name. I remember the names but what comes out of my mouth isn’t always correct. lol

Here’s a couple more things that have been happening to me with more frequency than before. When I’m tired or I’ve been concentrating on work all day sometimes at about 4pm I start slurring my words when I’m talking. This isn’t the best thing to happen to a telemarketer! lol I usually call it a day when I start my slurring. I repeat myself an awful lot, too. Part of this is because I have doctor documented short term memory loss from my MS but I repeat some things so I remember to do them. In the last few years I’ve also started losing track of words, thoughts and complete sentences when I’m talking. Everyone says this is because I’m getting older. That might be partially true but when it happens every three or four sentences I have to believe it’s a result of my multiple sclerosis.

This is another example. I have a friend in my little town who has Parkinson’s disease. He’s had it ten years and now his right side shakes when it’s later in the day. However, he stills works fulltime as a truck driver. He has a lively sense of humor which is why we get along. When we’re out for a beer and I’m talking he will purposely interrupt me with a single word to throw off my train of thought. I then lose where I was going with my story or comment. My friend does it just to be funny and I don’t mind but it does reinforce my thought that I do have some cognitive dysfunction.

When I’m tired at the end of the day or I haven’t gotten enough sleep the night before I may have some brain fog. Brain fog simply means the way of processing information becomes interrupted and slowed as a result of cognitive dysfunction caused by multiple sclerosis. It can also be from any of the range of cognitive deficits which can be caused by multiple sclerosis. When I have brain fog my mind just seems cluttered and I have trouble understanding even the simplest of thoughts. Another symptom I have I simply call being “short”. My young son can make me short in a hurry. For me short means my attention span or my temper becomes shorter.

I’ve always prided myself on being level headed and even keeled. Things didn’t ruffle me as badly as some other people. However, my “shortness” now makes me yell at my son more than is probably needed for a situation. Sometimes it just faster and easier to yell if he misbehaves. I don’t think that is the best thing to do, either. He’ll grow up learning to yell when things aren’t going correctly and I don’t want him to be like that. For me, I think it’s simply a result of my current life and what my MS is doing to my head.

Jon Wegner is a 50 year old resident of a small town close to Fargo, ND, USA. He’s lived there for four years after being a lifelong Minnesotan. Jon’s had multiple sclerosis for over 20 years. In 2007 his MS took the majority of his walking. He now rides his electric scooter 95% of the time to get around and has other MS related problems. Jon’s website, e-book, FREE newsletter and articles can be found at www.mymsbookandnewsletter.com Sign up for his FREE newsletter while your there.

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There are many symptoms associated with MS which occur to a greater or lesser degree These symptoms can include:

1) Blurring or Double Vision
2) Patches of Body Numbness
3) General Weakness (usually one side of body)
4) Muscle Spasms
5) Fatigue
6) ‘Pins and Needles’ in extremities
7) Loss of Balance and Coordination

8)Cognitive (ability to think) difficulties
9) Overall Sensitivity to Extreme Heat or Cold
10) Loss of Sensation in Affected Extremity
11) Problems with urinary and bowel function

MS is a difficult disease to diagnose.

The symptoms are vague and widespread mimicking those of other diseases. This is a disease of the nervous system which damages the protective coating (myelin) around the nerve and is thought to be an autoimmune disease. As this coating is destroyed the nerves become less and less efficient at transporting messages because these messages “leak”, become weaker and more erratic. When this happens it becomes more and more difficult to control movement or certain sensory activities in various parts of the body. Which nerves are damaged and to what degree varies widely so the corresponding loss of function varies widely. Slowly the myelin can rebuild and be repaired by the body but the repair is much slower than the rate of damage.

More Advanced Symptoms include:

1) Speech difficulty
2) Loss of Sexual Desire/function
3) Paralysis

At first, Multiple Sclerosis symptoms are Episodic (off and on). The symptoms usually last 1-3 weeks, then you go into ‘Remission’ for a few months. Some individuals may have one Episode and go into Permanent Remission. Others will gradually experience Progressive symptoms. As MS Progresses, your Remission time will have Residual (remaining) symptoms from your last episode.

MS cannot be caught. It is not an infectious disease but more women are diagnosed than men with a ration of 1.7 to 1 but woman are diagnosed earlier so the sex ratio is even greater below the age of 30. Men are most likely to experience their first symptom after the age of 40 but are also more likely to have the chronic progressive type. (see “The 4 Main Multiple Sclerosis Types”)

What is the course of the disease?

This is a difficult question to answer as there is a high degree of individual variation in symptoms and speed of progression. However as a rough guide one can say that at any one time 1/3 of people with MS are experiencing no serious relapses,1/3 are having a distinct relapsing-remitting course and 1/3 are experiencing a chronically progressive course.

Furthermore 1/3 have serious disabilities and require significant everyday support and 1/3 require significant lifestyle adjustment to manage their lives.

MS is not a fatal disease in itself and the improvements in healthcare over the past 50 years for this group have seen an increase in life expectancy and quality of life.

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