Multiple Sclerosis

Personal Experience with the Good News on Multiple Sclerosis Treatment

The head of our company is a senior physician. He’s been around a long time and has seen a lot. An academic colleague of his was diagnosed with multiple sclerosis in 1996, twenty-six years ago. Despite getting the best medication and medical care possible (he was a professor in a school of medicine) he passed away at age 64 in 2008, 12 years later, after years in a wheelchair with increasing debilitation. Later, in 2006, the wife of a good friend was diagnosed with multiple sclerosis. She got the new medications that were available and newer ones that became available. (Her husband was a physician at a major medical center.) She’s still relatively well and doing fine sixteen years later, in 2022, at age 69. No wheelchair, no debilitation. Many of the most effective medications for multiple sclerosis have been FDA approved in the past 15 years. 

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Multiple Sclerosis

Multiple Sclerosis (MS) is an autoimmune medical condition. (Examples of other autoimmune conditions are rheumatoid arthritis, type 1 diabetes, and inflammatory bowel disease.) In multiple sclerosis a person’s immune system, which is supposed to protect a person by attacking newly-formed cancer cells and foreign invader organisms, attacks healthy nerve cells. Nerve cells are the electrical connections that signal back and forth between and among everything in our bodies. Since the nerves go everywhere, multiple sclerosis symptoms can be almost anything, depending on which nerves are damaged. if you haven’t already read it, see our free main page on MS. The goal of treatment for multiple sclerosis is to stop it in its tracks, to halt any worsening of symptoms. When MS attacks occur, treatment is all about getting the attack to stop.

The Newer Medications Are More Effective for Treating Multiple Sclerosis

As illustrated by the story above, huge progress in treating multiple sclerosis has been made in the past twenty years. The progress has come from a better understanding of what goes wrong in MS and how to design better medications to protect the nervous system. These newer medications slow the worsening of MS. At times they slow MS progression to the point of almost stopping it. Medical science’s understanding of MS, the immune system’s attack, the nerve damage caused, and ways to treat it continue to improve. And the more we understand about what goes wrong the better we can design medications to stop the nerve damage. But while all the new medications are a great improvement over the past, none of them will cure MS. And we want a cure. The research world is working to find one.

One of our Readers in Manchester UK commented:

If you’re in the UK and you have MS getting care is a real mess. New medications don’t help anyone if you can’t get them to take them. Our National Health Service is really failing here.

Yes, it’s true, the United Kingdom and its National Health System is doing too little for people with multiple sclerosis. They are not getting appropriate care. Recently (December 2022) Phillip Anderson, the Head of Policy at the MS Society in the UK, published a statement about the crisis in care for multiple sclerosis in the UK.

He gives the example of the disease-modifying therapy siponimod (Mayzent®), the first and only oral disease-modifying therapy available for the secondary progressive form of MS. Only 5% of the people eligible to get it have it, which means that many are going without treatment. More than half of adults with neurological conditions in the UK (55%) are hitting delays just to get a routine appointment with a neurologist. Major advocacy organizations for people with neurological conditions have a petition drive to get a petition to all of the UK Health Ministers, urging them to set up a Neuro Taskforce to establish plans to improve treatment, care, and support for people affected by neurological conditions.

The Choice of Neurologist and the Treatment Team Is Important

Not every physician just down the street is an expert at treating MS. Medicine and medical care are a blend of science and art, and the need for a good blend of both is especially true when treating MS. The experience, skill, and training of the neurologist and the treatment team are important. Super important. The medications used, the close following of MS to see if it’s getting worse, getting repeated magnetic resonance imaging (MRI) scans as time goes by, and everything in treating MS is specific for each person. The MRI scans of your brain and spine examine for areas of damage and whether they’ve lessened or gotten worse. It’s not “one-size-fits-all”. MS is not a medical condition for which you should get care from any garden-variety general practice physician, bright and friendly though they might be.

Physical Therapy Is Important – Treating Multiple Sclerosis

While the medications for MS are the miracles, physical therapy remains really important in treatment. The nerve damage of MS can cause some muscles and joints to be used too little. Sets of stretching exercises and muscle strengthening exercises work to keep all the muscles and everything flexible and strong. Then when the next remission comes, life can be much more normal. If muscles get weak and tendons and ligaments get stiff during a relapse, life remains more difficult during the next remission.

Start MS Treatment While You’re Still Well, Start Right Away, and Stay With It

For the best result in treating MS it’s important to start the medication(s) and a physical exercise program as soon as you have the MS diagnosis. Then, once you start the treatment regimen, stay with it. Your medical treatment team has specific guidelines they follow on which medications to start and when to start them, when to switch from one medication to another, and when to stop a medication. So it’s important for you to see your neurologist often and carefully stay on track with the treatment plan if you want stay healthy. It used to be that people with MS would die younger than people in general. With these new medications and techniques this is no longer always true. But to live a full life people with MS need to take better care of their health than the average person does.

There Are Different Kinds of Medications for Treating MS

Some of the medications for multiple sclerosis are oral meds, others are injections, and others are infusion medications, dripped slowly directly into a vein over a period of hours.

And, There Are Different Medications for Different Types of MS

For Relapsing-Remitting MS

As we say on our main MS page, the most common type of MS is relapsing-remitting MS, or RRMS. There are several medications for RRMS that are called “disease-modifying”, meaning that they don’t just treat symptoms, they change the illness itself. Some are medications that can be taken by mouth and others must be injected under the skin or into muscle or infused into a vein. If the MS is not highly active a neurologist might start with one of the interferons or glatiramer. For highly active MS other medications might be chosen. Which medications and when to use them has to be part of an individual treatment plan for a specific person. In addition, one usually takes a steroid for acute symptom worsening and other medications for fatigue, or depression, or pain. Coordinating medications is why you need an expert neurologist to treat your MS.

More on Medications For Relapsing-Remitting MS

There are specialized medications that work well for RRMS. Some of them are given by injection or infusion, and some are taken by mouth. They have specific side effects that make them valuable only after an interferon or glatiramer have been tried, so these are definitely medications to be given by and monitored by a neurologist experienced in treating multiple sclerosis. Here’s a list of the ones that are injected or infused:

• natalizumab (Tysabri®) – given by intravenous infusion
• alemtuzumab (Lemtrada®) – given by intravenous infusion
• ocrelizumab (Ocrevus®) – given by intravenous infusion
• ofatumumab (Kesimpta®) – injected under the skin
• rituximab (Rituxan®, Truxima®, Riabni®, Ruxience®) – given by intravenous infusion
• mitoxantrone – given my injection

Oral Medications for Relapsing-Remitting MS

These are the medications that can be taken by mouth for RRMS. As with injectable medications, the choices must be individualized for a specific person. Here’s a list:

• fingolimod (Gilenya®) – oral
• siponimod (Mayzent®) – oral
• ozanimod (Zeposia®) – oral
• cladribine (Mavenclad®) – oral
• dimethyl fumarate (Tecfidera®) – oral
• diroximel (Vumerity®) – oral
• teriflunomide (Aubagio®) – oral

For Primary-Progressive Multiple Sclerosis

The second type of MS that we list on our main MS page is Primary-Progressive MS or PPMS. This PPMS type occurs in about 10% of new MS diagnoses. For this type, at least in terms of what is FDA-approved, there is one disease-modifying medication, ocrelizumab (Ocrevus®). It’s given by intravenous infusion. It’s an effective medication that is given every six months, continues to work for years, and has a good safety record. It’s a convenience of ocrelizumab that it needs to be given just twice a year.

Some Multiple Sclerosis Medications Can Be Expensive

The newer medications for treating MS can be expensive. Most offices and clinics that treat MS know about special programs to help with cost, how to apply to pay less, and can help you get the right medications for less. One can also appeal directly to the pharmaceutical company that makes a medication. The companies often help when they can.

There Are Times When a Rescue Medication is Necessary

Let’s say that you and your neurologist have found a set of medications that’s working and your MS is not worsening at all or maybe worsening very slowly. Then your symptoms suddenly change and get worse quickly. Most of the time the symptoms will lessen in a brief time without a rescue medication. But not always. This situation is another important time when you need that expert neurologist with experience. There are times when the MS does get much worse, too much so, and you need a rescue medication. For example, if your eyesight deteriorates, or you become weak or off balance. Such an situation might be a time for a burst of a steroid to rescue you.

Steroid Medications for Rescue from Multiple Sclerosis Attacks

If an MS attack occurs and your neurologist says you need a steroid rescue medication, it means that the nerve cells have become inflamed. Steroid medications are great for stopping inflammation. The one usually used that you can take by mouth is prednisone. In situations where there is a more urgent need to stop the nerve cell inflammation and damage a medication might be used that is infused directly into a vein. Intravenous methylprednisolone is one that’s often used. While these steroid medications are what’s needed they might have side effects, like disturbing sleep, or causing headaches, or making your muscles feel weak. Fluid retention or increased blood pressure are other possible side effects. They might cause upsetting mood swings or could cause a rise in blood sugar.

Plasma Exchange for Rescue from Multiple Sclerosis Attacks

There’s another approach for treating MS symptom attacks. Sometimes a new attack starts and becomes severe and steroids don’t seem to help. There is a treatment called “plasma exchange” or “plasmapheresis”. Some people think of it as a blood cleansing process. Blood is taken out and a machine separates the liquid part of your blood, the plasma, from the blood cells. The blood cells are then mixed with a solution with a protein in it called albumin. These cells and albumin are then put back into you. This takes the antibodies out of the blood that attack the nerve cells as part of a bad MS attack. Plasmapheresis takes about two to four hours. Depending on the severity of the attack and the benefit from the plasma exchange, a person might have about three to seven exchanges to stop a severe attack.

When Things Wrong, There Are Solutions

MS is a challenge. No one will deny this. Problem surprises might show up at any time. Fear not, your expert and experienced clinical team will have solutions. Here’s a short list. We don’t mean to scare you, but to let you know that if one of these difficulties appears might be because of the MS.

• Bowel difficulties
• Bladder problems
• Walking problems
• Tremors
• Muscle spasms
• Fatigue
• Sexual problems
• Pain
• Infections
• Itching
• Feeling upset and emotional in a way that’s just not you
• Depression
• Dizziness and/or vertigo

National Multiple Sclerosis Society Website

The National Multiple Sclerosis Society (based in the United States) website is an important support site. The staff of the National Multiple Sclerosis Society are dedicated individuals. The site tries to provide complete facts about what’s available.

https://www.nationalmssociety.org/

We will do our best to get fresh information to you, and to keep you updated as companies launch new medications or we find news of possible future medications. The important thing here is our ability to gather expert opinions about which new medications hold great promise, which will probably be somewhat helpful, and which are likely to be no help at all.

Reference:

The Medical Letter on Drugs and Therapeutics, Vol. 63 Issue 1620, March 22, 2021, pp. 42 – 48.

Helpful links:

Check the ClinicalTrials.gov website for recruiting and not-yet-recruiting studies of MS.

National Multiple Sclerosis Society on Treating MS

e-medicine’s Medscape on Multiple Sclerosis Treatment & Management

The Mayo Clinic on Multiple Sclerosis Diagnosis and Treatment

Early Diagnosis and Successful Treatments Make Us Optimistic about Multiple Sclerosis

In just the past seven years medical research has achieved groundbreaking advances in the diagnosis and treatment of multiple sclerosis (MS). With the progress accomplished it’s easy to be optimistic. Seven new medications for relapsing-remitting MS (the most common type) and a first ever medicine for primary progressive MS have been approved by the FDA. Just 30 years ago, except for a lucky few, a diagnosis of MS usually meant a slow medical decline to disability and an early death. However, diagnosing the appearing and disappearing symptoms of MS remains a challenge. Treatment requires conscientious care and cooperation of the person with MS, the doctor, and the treatment team. If you have been diagnosed with MS, you need to find a trained, skilled, and experienced MS neurologist. The right doctor and team will give you the best hope for a long, healthy, happy life.

Welcome to the Neuroscience Research and Development Consultancy website. Have a question or a comment? Send it to us at: Comment@NeuroSciRandD.com

What Is MS?

MS is an autoimmune condition, that is, a medical disorder caused by the body’s defenses attacking itself. This immune system defense causes inflammation, attacking nerves in the central nervous system, that is, the brain and spinal cord. Since these nerves are the electrical connections going to every place in the body, what symptoms appear depends on which nerves are attacked and damaged. The result is that the symptoms can be almost anything. MS is a common neurologic disorder. Except for traumatic injury neurologic damage, it’s the most common cause of neurologic disability in people under the age of 40.

The Changing Signs and Symptoms – Now It’s Broken, Now It’s Fixed

MS is a frustrating disorder for both patient and doctor. It’s symptoms are impossible to predict. Symptoms can be almost anything and they come and go. And no one ever wants a surprise problem symptom. Before the condition is diagnosed the person can feel that they’re living in an upsetting, unpredictable world. It’s a relief once the diagnosis is made. Everyone understands what’s happening. Before the diagnosis they can’t understand why suddenly one leg that won’t work right or why there are nerve tingles that won’t go away. Then, after a while, the symptoms go away and it’s all back to normal. But gradually, as time goes by, not all symptoms go back to normal. The repair processes to fix damaged nerves can’t keep up with the new damage. Eventually, some new symptoms hang on long-term, and at this point life gets harder.

A Reader Asked: My uncle died of MS 30 years ago. Do people no longer die of MS?

The range of symptom severity and outcome vary too much to make a blanket statement. It’s true that the most mild course of MS can have rare relapses and overall minimal disability. But the worst clinical course of MS is called “fulminant” and is severe MS with many relapses and fast deterioration toward disability. Most doctors refer to a middle-of-the-road description, using relapsing-remitting (RR) MS as the example. About 85% of people with MS have the RRMS type. Symptoms come and go over time. People recover from the relapses after a few weeks or months even without treatment, but over time they don’t completely recover. As time goes by these residual symptoms built up and cause disability. An early diagnosis helps keep the MS more mild because disease-modifying treatments can be started right away. Effective therapy lessens relapses and, long-term, lessens disability.

What Affects How Severe the MS Becomes?

Again, this is hard to say because the severity varies so much from one person to the next. Studies over time have come up with some things that seem to predict worse disease and some that are found with less severe illness. Things that go with a more benign disease course are female gender, mild relapses with good recovery between relapses, a long interval between the first and second relapse, few brain lesions on MRI scan, having optic nerve neuritis, and full recoveries from relapses. Things that go with a worse disease course are male gender, frequent relapses early on, minimal recovery between relapses, onset in several areas at once, faster disease progression, and a lot of brain lesions and brain atrophy on MRI scans.

Here Are Examples of a Few MS Symptoms

Here are a few examples of symptoms that people with MS might have. Maybe a bit of trouble walking. Maybe tired all the time, fatigued, or can’t think clearly, and it comes and goes. Or, odd bladder problems or bowel problems. Inability to see clearly, eyesight is not good, just not right. There could be a muscle that refuses to work. As we mentioned above, nerve tingles somewhere that won’t go away. It could be that the person seems to go dead regarding sex. Pain is possible, a new pain somewhere. A person who’s always been cheerful might start having a real down mood. As you can tell, the list goes on. An early diagnosis is important. It means that treatment can start right away, which helps keep a good life quality.

MS is Called the Great Medical Imitator

Because there are so many different possible starting symptoms, before about 20 years ago it was really difficult to diagnose MS early. Doctors called MS the “the great imitator” because it could look like so many other disorders. Back then it was not until MS became more long-term and severe, and the individual became disabled, that the diagnosis became clear.

MS Hits A Person During Her/His Best Years

MS mostly hits young to middle age adults. Right when their personal lives are great and their work and careers are productive. Wives and husbands are in the midst of starting their families. Men and women are starting to gain ground and stature at work. These are people age 20 to 50. It’s about two to three times more common in women than in men. And, as we said above, it’s a common disorder. Apart from traumatic nervous system damage, it’s the most common neurologic disability for these ages.

Treatment for MS – Multiple Sclerosis and Optimism

While it is true that MS can be treated, it’s not easy. It requires work, thinking, and planning. We’re all waiting for a real cure, a complete cure, but there isn’t one yet. People are trying hard to find one. The many medications we have now work, but we need better. See our article on MS treatment to learn more.

A Good Physical Therapy / Exercise Program Helps

In addition to disease-modifying medications, physical therapy is a great help, and then an exercise program based on what is learned in physical therapy. It’s really important to keep moving, to exercise frequently and regularly. One needs to work to build new muscle, to fight against losing muscle, and to stay strong. The whole treatment plan will be aimed at maximizing daily function, keeping and improving all that you can do. You have to keep moving and keep thinking.

What About “Alternative Medicine”? Are there Alternative Medicines That Work?

We need to say something first. We of the Neuroscience Research and Development Consultancy love new things. New ideas and new medications are great. It’s what we do. New treatment approaches. We felt the need to explain ourselves first because of what we’re about to say. For MS, walking down the path of “alternative medicine” is a really bad idea. We wish it weren’t true, but alternative medicine for MS is a trap. There are many, many “alternate” treatments promoted for MS and none of them work. We understand that desperate people will try just about anything. But don’t go this direction. Really, none of these work. If you happen to like one that is harmless, that’s fine, go ahead with it. But it won’t treat the MS, so don’t stray from your real medical treatment plan.

Three (or Four) Types of MS

As we said above, there are different types of MS. MS can appear in a person’s life in several different ways. And MS can move forward, get worse, or get better, seemingly always going in different directions. These different patterns of starting and moving forward can be divided into three or four main types. (Type four below might not be MS at all.) Which type a person has is important because it will determine which disease-modifying therapy will work the best.

The First Type of MS – Relapsing-Remitting MS

This is the most common type of MS. About 85% of people with MS have this type. It’s called relapsing-remitting MS, or RRMS. The symptoms start, get worse over a few days or weeks, and then get better over the next weeks or months. The MS then might “stay better”, that is, be in recovery, for months or years. But “better” does not always mean well. Sometimes there are symptoms that hang around, residual symptoms, little losses that don’t fully recover. Over several years, or maybe many years, these small bits of “not all the way better” can add up to a real disability. After 10, or 15, or 20 years the relapses no longer occur but neurologic deficits have accumulated and continue to slowly progress. This stage of the condition is the next MS type, secondary progressive MS.

A Second Type – Secondary Progressive MS

All those 85% of people who start with the first type above, RRMS, at some point get to this much later second type called secondary progressive MS, or SPMS. Those small leftover symptoms from the RRMS add up over time to become a bigger number of symptoms, often enough to cause problematic disability. At times there can be a small, brief lessening of symptoms but overall the disease course is downhill.

A Third MS Type – Primary Progressive MS

So the 85% of people with MS start with the RRMS. What about the other 15%? About 10% or 15%, that is, about one out of ten, people with MS have this primary progressive MS, or PPMS. This type usually starts later in life, during one’s 40s or 50s. With PPMS, unfortunately, once the symptoms start they never go away. Unlike RRMS that waxes and wanes and might go away, PPMS starts and never stops. The accumulation of symptoms can progress quickly to disability.

Finally, A Fourth Type – CIS

After the two troubling types above, SPMS and PPMS, this 4th type is a relief and might not be MS at all. It’s called Clinically Isolated Syndrome (CIS). With CIS one gets symptoms of MS for a day or more, then they go away. The symptoms might never come back. But it’s also possible that after an interval the symptoms might return. If the symptoms do come back later this first evidence of symptoms is no longer called CIS. It has become the first of repeated relapses, so the diagnosis is RRMS. Most of the time a doctor in a well-equipped medical center can have brain imaging done. Brain imaging will probably be able to predict who with CIS will have another attack and who will not.

Early and Accurate Diagnosis: The McDonald Criteria

Since the earliest accurate diagnosis is vitally important to start the best disease-modifying treatment right away, criteria to affirm what is and what is not MS are critical for success. Since the first signs for what later could be full MS is the Clinically Isolated Syndrome, the criteria are used when a person presents with a typical CIS. The McDonald criteria are used after the completion of a full assessment. A full assessments means a review of all symptoms, a physical examination, testing, and careful and full consideration of all other diagnoses that might cause the symptoms. If the full assessment supports that this CIS might be MS, the criteria are applied. The criteria apply to the timing and physical location of brain and spinal cord lesions on MRI scans. The initial 2010 McDonald criteria were revised in 2017.

So What Eventually Happens with MS? Multiple Sclerosis and Optimism

As laid out above, what eventually happens to a person with MS depends. One thing it depends upon is an early and accurate diagnosis. That’s why getting a good diagnosis of MS as early as possible is so important. There are at least sixteen disease-modifying medications available to treat MS. If MS is found early and the person works hard with a skilled and experienced neurologist and the whole treatment team, modern medicine can help most people live almost a full lifespan, and perhaps a full lifespan. However, that changes if the individual has had MS for a long time before a diagnosis is finally confirmed and treatment started. In this situation there might be more symptoms present long-term and lifespan might be shorter than wanted. This same unfortunate situation can occur if the individual does not or cannot work hard with the doctor and the treatment team to stay with the treatment plan.

Helpful links:

NIH National Institute of Neurological Disease and Stroke on Multiple Sclerosis: Hope Through Research

National Library of Medicine Medline Plus on Multiple Sclerosis

National Multiple Sclerosis Society answering the question: What is MS?

The Mayo Clinic on Multiple Sclerosis

Michael J. Olek DO. In the Clinic: Multiple Sclerosis. Annals of Internal Medicine, June 2021, Vol. 174, No. 6, pp. ITC81-ITC96.

The 2017 McDonald Criteria for diagnosing MS