What is Multiple Sclerosis? In Layman’s terms

What is Multiple Sclerosis? In Layman’s terms

I have been blogging about living with Multiple Sclerosis for many years. But, what is Multiple Sclerosis and how does this debilitating disease really affect a patient? However, the research for this article was completed with the aid of Google. The first thing I have noticed is that Google attempts to list the frequently asked question about Multiple Sclerosis.

Multiple Sclerosis in Layman's Terms

Multiple Sclerosis is a disease wherein the body’s immune system attacks the insulation and support around nerve fibres. This results in impaired nerve function. This damages the nerves that are involved in sensory, movement, cognition, and autonomic functioning. This is due to the demyelination of the axons.

What is Multiple Sclerosis?

So, rather than give you my personal view of what is Multiple Sclerosis, I thought it might be more informative to share the community opinions.

These are:

Understanding What is Multiple Sclerosis

These are all questions that people have asked of Google in an attempt to find answers. The thing that worries me, is that I think I have answers for nearly all of the questions.

I have had MS for over 25 years so, it is entirely possible that I have asked these questions myself.

In fact,  these FAQs are just a small sample of the questions I stumbled across.

So, I shall take one question at a time. Give the answer that Google found and then give my opinion with my experience.

Nurse holding an oxygen mask asking What is multiple sclerosis

What are usually the first signs of MS?

The answer provided came from www.healthline.com and came in the form os a symptom list.

  • vision problems.
  • tingling and numbness.
  • pains and spasms.
  • weakness or fatigue.
  • balance problems or dizziness.
  • bladder issues.
  • sexual dysfunction.
  • cognitive problems.

This is a list of symptoms that I am all too familiar with. My very early symptoms were tingling and numbness. I got the tingling and numbness in my hands and forearms.

I have had all of these symptoms over my 25+ years with Multiple Sclerosis.

Can you die from multiple sclerosis?

The answer given to this query came from msfocus.org and corroborated my own opinion.

MS is not, except in very rare situations, fatal. In the advanced stages of disease progression, complications can cause infections and pneumonia.

I am now in my sixties and my mother, who also has MS, has just had her 85th birthday.

Can you live a normal life with MS?

It falls to healthline.com again, to provide this answer. People with MS will experience a normal lifespan. And die from the same conditions, like cancer or heart attack, as the people without MS.I refer to the above question and answer, and state that based on the genetic longevity of my parents, I fully expect to live into my eighties.

Furthermore, it rather depends on what you mean by a “normal life”. I would suggest that your life will change, or must change after you have been diagnosed with Multiple Sclerosis.

While your symptoms may be mild, to begin with. You must accept your diagnosis and change your lifestyle accordingly.

What age do people get Multiple Sclerosis?

The answer to this question is given by medicinehealth.com. Women are more susceptible to MS than men.MS is usually diagnosed in people between the ages of 20 and 50. The average age of MS onset is 34. MS can affect children and teens. In these cases, the disease is referred to as pediatric MS.

Based on this information, I am decidedly average. I was diagnosed at 34. The early years of MS were, in my opinion, the worst. I was so ill that I didn’t think I would see 40. But the disease seems to have plateaued in the last 10 years.

On one occasion, I became awkwardly aware of how serious MS  can be. My wife and I were at an airport waiting for a departure. I became aware of a young woman, apparently paralysed, lying on a stretcher in the departure lounge.

Later, as we were boarding the plane. The young woman was brought passed us onto the plane. She was accompanied by an older woman, who I took the opportunity to talk with.

I was informed that the young woman was 19 and had multiple sclerosis. This led me to feel awkward and guilty. At this point, I was still fully mobile and walking unaided.

What does an MS attack feel like?

Healthline.com provide an answer that makes reference to the numbness and tingling in the arms.

I feel that this answer does not adequately address the question. MS exacerbation may also be called MS flares. This is a period where your symptoms become more pronounced. It may also be a time when new symptoms appear.

My own experience is that I only know I have been having a flare or an exacerbation after it has passed.

Because one of my persistent symptoms is Brain Fog. This leaves me detached from reality and happily floating around in my own world of ignorance.

It is only after the exacerbation has subsided that my lucidity returns and I become aware of having had a flare.

How an MS attack feels depends very much on the symptoms you are experiencing at the time.

Is Multiple Sclerosis caused by stress?

I am pleased every time an “expert opinion” concurs with my own. The view of nlm.nih.org is that stress is an exacerbating factor in the development and progression of MS. Exactly in accordance with my own beliefs and experience. An exacerbating factor, not a causal link.

There have been times that have been stressful and on these occasions, I can feel the energy drain from my body and my MS symptoms worsen.

I recall meeting a young couple when we were on holiday. The guy had quite severe MS and was walking with crutches. They were on the same flight as my wife and I.

He did not know where they were staying or how they were getting there. His wife did not want him to stress, so she had taken care of all the travel arrangements.

My own defence against stress is to cultivate a laissez-faire attitude that stress cannot penetrate.

Can someone with MS live a normal life?

Yes, I have already answered this question.

What happens with untreated Multiple Sclerosis?

According to healthline.com half of the people with RRMS will, without treatment, develop SPMS within 10 years.

This has worried me. I have now developed SPMS and I have had no treatment. But, I don’t recall ever being offered treatment that might have prevented this.

I was offered beta-interferon to reduce the chances of relapse. But, the side-effects were reported to be very severe, so I declined the offer.

Can MS be stopped if caught early?

The Mayo Clinic suggests that several disease-modifying therapies are available. Much of the immune system response associated with MS occurs in the early stages of the disease. Aggressive treatment with these medications as early as possible can lower the relapse rate and slow the formation of new lesions.

I was offered beta-interferon early in the course of my multiple sclerosis. I decided to decline this treatment because I had been informed that the side-effects were like having influenza constantly.

While weighing up the likelihood of constant flu against the possibility of reducing my relapse rate by about 5% to 10% These were the figures my G.P. gave me. It seemed to me that the choice was evident.

This treatment would not have stopped MS although it might have slowed it.

What does MS leg pain feel like?

The National MS Society explains that these are painful sensations that can affect the legs, feet, arms and hands and feel like burning, prickling, stabbing, ice-cold or electrical sensations. They can interfere with daily activities, sleep and overall quality of life.

Pruritis (itching) is a form of dysesthesias and may occur as a symptom of MS.

I have a form of dysesthesia almost constantly. I get itching of the scalp when I am trying to sleep at night. My legs feel as though they are constantly throbbing. I wouldn’t describe it as a pain. My mother also has MS and she describes a burning sensation in her legs.

A distant relation, who also has MS, has constant burning in his legs, to the point where he always wears short trousers, even in the coldest weather.

How can you test for Multiple Sclerosis at home?

The Multiple Sclerosis Trust say:  Not all of these tests will be tests for MS. For example, MS can’t be diagnosed from a blood test, but you may have some of these to rule out other conditions.

I understand from this type of question that the patient is looking for a way to test themselves for MS. I don’t believe there is any such “home test”.

When I was diagnosed, I attended the Aberdeen Royal Infirmary where I received a lumbar puncture and an MRI Scan. Both of these procedures must be carried out at a hospital with the correct equipment and qualified staff.

Nursewearing a mask and holding a hypodermic needle ypu don't need a jab for What is multiple sclerosis
Mask Wearing Nurse

Can MS come on suddenly?

Everyday Health report that “MS attacks usually come on slowly over days to weeks, although sometimes they can happen suddenly and even get mistaken for a stroke,” says Dr Kantor. No two relapses are alike. The severity of your symptoms can run the gamut from mild or barely noticeable to severe and debilitating.

In my case, the development of full-blown MS happened gradually over a period of two or three years. I had RRMS or Relapse/Remitting MS and this is the normal, whatever normal is, progression of my form of the disease.

However, a good friend of mine has PPMS or Primary Progressive MS. His onset was much more rapid. He was retired from his job on medical grounds, after being diagnosed. He deteriorated quite quickly, over a couple of years to the point where he was immobile and wheelchair-bound.

How long does MS take to disable you?

According to the NMSS, around two-thirds of people with MS are able to walk without a wheelchair two decades after their diagnosis. Some people will need crutches or a cane to remain ambulatory.

I think this is a question without an answer. You can have MS and never become “disabled”. Or you can have MS and lose the ability to walk in a matter of weeks or months.

In severe cases, you could end up completely immobile, effectively paralysed. However, this is a very rare occurrence.

What are the four stages of MS?

There are a few different types and stages of MS, which differ in how they progress. Clinically isolated syndrome (CIS) Relapsing-remitting MS (RRMS) Primary progressive MS (PPMS) Secondary progressive MS (SPMS).

I think this question has been posed by someone with some familiarity with multiple sclerosis.

I have seen 4 stages of MS listed as:

  • Benign MS
  • Relapse/Remitting MS (RRMS)
  • Secondary Progressive MS (SPMS)
  • Primary Progressive MS (PPMS)

I was diagnosed with RRMS which has developed into SPMS after about 10 years. My friend, who I mentioned earlier was diagnosed with PPMS.

Does everyone with MS end up in a wheelchair?

Only 25 per cent of people with MS use a wheelchair or stay in bed because they are unable to walk, according to a survey completed before the new disease-modifying drugs became available, according to Health Central.

In the same way that each of us is unique, the disease of multiple sclerosis affects each of us differently. So no, not everyone ends up in a wheelchair.

I actually have two wheelchairs. I can walk, shuffle, around the house without much difficulty. But, walking to the shops is too strenuous.

One of these wheelchairs was given to me by my friend with PPMS. He was upgrading his wheelchair and no longer needed the wheelchair he gave to me.

The second wheelchair, we bought to take on holiday. However, this was bought just before the Covid19 lockdown. So flying has been banned and my new wheelchair has yet to be used.

What is end-stage MS?

When a patient with multiple sclerosis begins to experience more pronounced complications, this is considered endstage MS. Some of the endstage MS symptoms patients may experience include: Limited Mobility – Patient may no longer be able to perform daily activities without assistance according to Crossroads Hospice.

I will be honest, and say I have never considered an end-state to Multiple Sclerosis. The one thing I will say about MS is that it makes you focus on today! Yes, I like to make plans for tomorrow and sometimes next week.

But, I seldom look much further ahead, unless it is to plan a holiday.

However, it does force you to think about mortality. We all know that someday, our lives will end. But, that day is always far in the future, MS makes you realise that the fateful day in the future may not actually be quite so far.

What famous person has MS?

Healthline has put together a list of celebrities including Joan Didion, Rachel Miner, Jack Osbourne, Clay Walker, Ann Romney, Jamie-Lynn Sigler, Richard Pryor, Frasier C. Robinson III, Gordon Schumer, President Bartlett from ‘The West Wing’ and Jason DaSilva.

Sadly, MS is no respecter of status or celebrity. I would add the names of Alan and David Osmond and Alison Peebles to the list.

Is coffee good for MS?

Healthline, again report that some studies suggest that neuroprotective properties, like those found in caffeine, may actually help reduce the chance of developing MS. People who also reported high consumption of coffee exceeding 900 mL per day showed significantly less risk of developing MS vs. those who never consumed it.

I have seen these reports and take the results with a very large pinch of salt. Coffee is a regular morning tipple.

I try to follow the Wahls Protocol and this forbids coffee outright. We don’t need coffee, so why take the chance.

Can you have MS for years and not know it?

A person can‘t be diagnosed with benign MS from the onset, even if initial symptoms are mild. There’s no way to predict if or how MS will progress in the years to come. According to Johns Hopkins Medicine, about 5 to 10 per cent of people with MS have a benign form.

For many years, my symptoms were very mild. I only suspected MS because my mother has Multiple Sclerosis and I know there is a possible hereditary link.

Additionally, I and many others, go through a period of denial. When you refuse to believe the numbness in you hand or face is a sign of a neurological problem.

Is Chocolate good for MS?

Medical News Today tells us that cocoa may help treat common MS symptom. New research, which features in the Journal of Neurology, Neurosurgery & Psychiatry, finds that having a cocoa drink every day for 6 weeks helps combat fatigue in people living with multiple sclerosis.

Well! What can I say? Chocolate must be good for MS, I eat enough of the stuff.

But, on a serious note, Chocolate is made from cocoa and is, essentially, plant-based. And some of the compounds found in chocolate are flavonoids. These flavonoids occur naturally in fruits, vegetables, wine and tea.

Furthermore, studies have shown these flavonoids to have anti-inflammatory properties. These have antidiabetic, anticancer, and neuroprotective benefits.

Note: these results refer to MS symptoms rather than the disease itself. I also eat plain chocolate as I try to be dairy-free.

What happens with an MS attack?

What is an MS attack? An exacerbation of MS causes new symptoms or the worsening of old symptoms. It can be very mild, or severe enough to interfere with a person’s ability to function at home and at work. No two exacerbations are alike, and symptoms vary from person to person and from one exacerbation to another.

I have found that MS exacerbations occurred more frequently in the early years of living with MS. I would have a bad relapse every four or five years.

During one attack, my eyesight was badly affected. I was almost blind for several weeks.

Furthermore, I believe that our bodies are continually fighting against the disease. Sometimes, we have the upper hand and sometimes MS is winning.

This is why, in my opinion, the disease relapses and remits.

What should I avoid if I have MS?

Top 10 Worst Foods for MS

  • Saturated Fats. Avoid foods high in saturated fats and trans fats. …
  • Alcohol. Alcohol is a central nervous system depressant. …
  • Sugar. …
  • Aspartame. …
  • Refined Grains. …
  • MSG. …
  • Full Fat Dairy. …
  • Salt.

Interestingly, the answer Google found is from a holistic nutrition site in AFPA Health, Nutrition & Fitness.

As a long-time believer in the healing power of food, this is encouraging. I follow The Wahls Protocol which is a dietary regime designed to overcome the chronic illness of \multiple Sclerosis.

I would add that stress is something to avoid if you have MS.

Ask a doctor to find out What is multiple sclerosis

What causes multiple sclerosis flare-ups?

Here are some of the most common triggers you may experience with MS and tips to avoid them.

  1. Stress. Having a chronic disease like MS can establish a new source of stress. …
  2. Heat. …
  3. Childbirth. …
  4. Getting sick. …
  5. Certain vaccines. …
  6. Vitamin D deficiency. …
  7. Lack of sleep. …
  8. Poor diet.

Like so many of the earlier answers, this came from Healthline.

This is a very interesting list. The list is headed by stress, as mentioned in our previous comment.

Heat can be very debilitating to someone with MS. However, it must be a certain combination of heat and humidity. Because I love to holiday in Spain and find the Spanish heat quite tolerable.

Getting sick can be very traumatic. The sickness is very likely to affect the MSer more seriously than it might a non-MSer.

Additionally, it is believed that a viral infection might be the trigger to start MS in the first place.

It is absolutely essential to pay very close attention to your diet if you have MS.

Furthermore, MS, especially RRMS, will flare and subside as the body fights against the disease. As we discussed in What happens with an MS attack?

What is worse Parkinson’s or MS?

Multiple sclerosis and Parkinson’s disease have a lot in common. Learn about similar symptoms as well as what causes each disease and how they’re treated. … Both diseases can cause your hands to shake, for example. Does that … Both can start out with mild symptoms, but they get worse over time.

This response came from WebMD and compares MS with Parkinson’s Disease rather than rank one above the other in terms of severity.

I know very little about Parkinson’s Disease other than it is a form of dementia and is a brain disease. I can understand why there are similarities but can offer no explanation.

Can MS just go away?

It’s a chronic condition. Multiple sclerosis is a chronic condition, which means it’s long-lasting and there’s no cure for it. That said, it’s important to know that for the vast majority of people who have MS, the disease is not fatal.

Again, this comment is from Healthline. I would concur with the Healthline view. Once you have developed MS, you are stuck with it for life.

However, with the correct treatment and the right diet, you can reduce the symptoms to the point where they no longer appear.

So, the symptoms of MS can go away but, the underlying disease will always be there.

What is it like living with multiple sclerosis?

Google did not find a specific answer to this question. Instead, you are referred to Explore Health to get the answer. The Sopranos actress, Jamie-Lynn Sigler, after announcing her diagnosis with MS, spoke to a number of other people living with MS.

Again, we are looking at a celebrity living with MS. I, on the other hand, have no celebrity status and 25+ years of experience.

When you are living with MS you adapt. There is no right way, we are all different. I modified my diet and lifestyle. And I took the decision to give up work. I have survived up to now.

I have written a number of posts on this very subject. After all, I do know exactly what is involved in living with MS.

Is Multiple Sclerosis considered a disability?

If you have Multiple Sclerosis, often known as MS, you may qualify for Social Security disability benefits if your condition has limited your ability to work. To qualify and be approved for disability benefits with MS, it is important to have strong medical documentation supporting your case.

I am not at all sure if this answer from Disability Benefits Help answers this question. Yes, the Department of Social Security can consider it as a disability. And I receive a PIP payment which is another story.

However, I most certainly consider Multiple Sclerosis as a disability. My own movement and lifestyle is restricted by his disease.

I am in constant pain and have great difficulty concentrating for more than half an hour.

But, I consider myself lucky. I have met a number of other people with MS who are far more disabled than I am.

How can I beat Multiple Sclerosis naturally?

THE SEVEN STEPS TO BEATING MS. EAT well. Give up meat, dairy and other foods high in saturated fats in favour of a plant-based wholefood diet with seafood, supplemented by 20-30 millilitres a day of omega-3 fatty acids, ideally from flaxseed oil. EXERCISE regularly.

This response came from a Daily Mail interview with George Jelinek. If you have MS and do any kind of online research you will know the name of George Jelinek. I have known about George for many years.

Postive Mindset in Poor Circumstances
A listening Ear

Would you know if you had MS?

MS is a disease with unpredictable symptoms that can vary in intensity. While some people experience fatigue and numbness, severe cases of MS can cause paralysis, vision loss, and diminished brain function. Common early signs of multiple sclerosis (MS) include: … tingling and numbness.

This fairly standard answer came from Healthline.

And I would concur with this answer. My own disease progression began with tingling and numbness in my hands, arms and face. I now have very poor vision and many signs of dementia. Although dementia could just be a sign of age. But, I don’t think so.

I know of two people who are paralysed with MS and I feel very sorry for them.

On the question of knowing you have MS. When the symptoms manifest as physical limitations, you will be well aware of them.

However, when you are suffering from cognitive impairment, you may not be aware. You need to be able to make a rational assessment of your health. And the MS brain fog may prevent this logical thought process.

What is best medication for MS?

Treatment options for relapsing-remitting MS include injectable medications, including:

  • Beta interferons. These medications are among the most commonly prescribed medications to treat MS . …
  • Glatiramer acetate (Copaxone, Glatopa).

I would point out that both of these treatments are for Relapsing/Remitting MS and both have serious side effects. I was offered Beta interferon but, declined it after I weighed up the pros and cons.

Lifestyle and diet are far better medications. In my opinion. The only medication I am currently using is Amitrytiline to help me sleep.

Does Multiple Sclerosis cause weight gain?

MS causes fatigue, making you feel too exhausted for physical activity. The pain and dizziness can also affect your energy levels when it comes to exercising. Symptoms of depression are also common for people with MS. This can lead to emotional eating, causing weight gain and loss.

This came from a very good article on Managing Weight for MS. All I can add is that I do not gain weight, I struggle to stop losing weight.

However, I did become aware of a more serious weight condition. I was unable to build muscle mass. In accordance with the guidelines, I was taking regular exercise.

I was doing some lightweight training with 3kg dumbbells. I was doing regular arm curls with these weights. Performing a set number of re[ititions with each arm.

After a few weeks of this routine, I could see a considerable improvement in the bicep muscle of my right arm.

However, despite exercising my left arm in exactly the same way, for exactly the same duration. The bicep muscle in my left arm showed absolutely no improvement.

What does a neurologist do to check for MS?

Your neurologist will look for abnormalities, changes or weakness in your vision, eye movements, hand or leg strength, balance and coordination, speech and reflexes. These may show whether your nerves are damaged in a way that might suggest MS.

I have consulted with four neurologists over the years. And the only time they ever performed any tests was when I was first diagnosed at the Aberdeen Royal Infirmary.

I have had my reflexes checked on a number of occasions by my G.P. And my leg always responded vigorously to having my knee tapped with a little rubber mallet.

However, I have learned that an overly vigorous response is actually a sign of possible MS. So, I had been quite happy that my leg kicking out the way that it did, was a good response.

But, i was lulling myself into a false sense of security. The signs had been there all along. If only I or my doctor had interpreted them correctly.

Summing Up

We have answered many questions from the MS community but, we may have missed you question. We try to be helpful.

However, we are not seers and cannot anticipate every possible question. If we missed yours, please pop it into the comments at the end of this post and the community will come to the rescue, we are sure!

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