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KEY TAKEAWAYS

• Secondary progressive multiple sclerosis (SPMS) is diagnosed in people who have previously been diagnosed with relapsing-remitting multiple sclerosis (RRMS).
• Symptoms of SPMS include various cognitive, motor, and neurological symptoms, depending on how MS impacts the central nervous system.
• Transition from RRMS to SPMS can be gradual or swift, and it varies from person to person.
• SPMS can be challenging for doctors to diagnose.

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Multiple sclerosis (MS) progresses in different patterns, or disease courses, depending on how it first presents and then develops. Each type of MS has a different disease course. It is common to be diagnosed with one type of MS at first, and later another type if the disease course changes. Secondary progressive MS (SPMS) is diagnosed when people with relapsing-remitting MS (RRMS) transition to a more steady disease progression.

What Is Secondary Progressive Multiple Sclerosis (SPMS)?

The phrase “secondary progressive” indicates that SPMS can only be diagnosed in a person who has previously had relapsing-remitting MS, whether or not their RRMS was diagnosed. An SPMS diagnosis can only be made retroactively. This means a person must have the signs and symptoms of SPMS for six months to a year to be diagnosed.

The change in diagnosis from RRMS to SPMS is based on evidence of plaques, also called lesions or scar tissue, on the brain or spinal cord. Plaques can only be seen and analyzed via magnetic resonance imaging (MRI). MRI results determine whether a person’s SPMS is:

• Active — A person experiences relapses or MRI shows evidence of new activity over a specified period of time.
• Not active — No new MS activity is detected.

Based on the Expanded Disability Status Scale (EDSS), SPMS is further described as:

• With progression — A person experiences worsening disability over time, whether or not their MRI shows new activity or they experience relapses.
• Without progression — A person’s level of disability has not increased.

How Does SPMS Differ From Other Types of Multiple Sclerosis?

As their names suggest, primary progressive MS (PPMS) and secondary progressive MS are both progressive types of multiple sclerosis. SPMS develops in people who have previously had relapsing-remitting MS. People with PPMS experience progressive MS from the beginning, without any periods of remission.

Relapsing-remitting MS is characterized by a series of flare-ups, or relapses, followed by periods where symptoms cease, also known as remission. Sometimes this pattern of relapse and remission gives way to a more steadily progressing form of the disease, SPMS. SPMS is characterized by a steady worsening of neurologic function and increased disability. Sometimes people diagnosed with SPMS experience relapses, as well as periods of less disease activity.

What Are the Symptoms of SPMS?

The symptoms of SPMS vary from person to person. MS symptoms can be grouped into broad categories: motor symptoms, cognitive symptoms, and symptoms that affect other aspects of the body.

Problems with balance and walking are the most common symptoms reported by people with SPMS. In one survey, more than 88 percent of people with SPMS reported balance and gait issues. Balance and gait issues are the second most common symptom for those with RRMS, affecting almost 70 percent.

Symptoms of SPMS depend on which parts of the central nervous system are impacted. “My symptoms are not as bad as most of the people I’ve met on MyMSTeam who also have SPMS,” shared one MyMSTeam member. “My symptoms are mainly pain, numbness, and loss of use of my right hand, zero balance, and optic neuritis.”

How Do MS Symptoms Progress to SPMS?

SPMS usually presents as an increase in a person’s MS symptoms. The transition from RRMS to SPMS may be gradual or rapid. Each case of MS, regardless of phase or type, is unique. No two people are the same. Even for trained doctors, identifying the transition to SPMS can be difficult.

Who Gets SPMS?

Studies indicate that most people with MS transition to SPMS eventually. Around 50 percent of those diagnosed with RRMS will transition to SPMS within 10 years. Ninety percent of people with RRMS will transition to SPMS within 25 years. Older age at disease onset is linked to a greater risk of transitioning to SPMS.

Can a Transition to SPMS Be Prevented?

There are about a dozen disease-modifying therapies (DMTs) approved by the U.S. Food and Drug Administration (FDA) to treat relapsing forms of MS, including for people with SPMS featuring relapses. However, Mavenclad (Cladibrine), Mayzent (Siponimod), and Novantrone (Mitoxantrone) are the only drugs specifically approved to treat SPMS. Experts agree that DMTs have an impact on MS progression. However, it’s too soon for hard data on the extent that these medications can alter or delay the transition to SPMS.

Will SPMS Cause Disability?

Everyone’s MS prognosis is different. Sometimes SPMS will impact mobility and physical function, leading to varying degrees of disability. Some people with SPMS will experience greater disability than others. Data suggests that more than two-thirds of people who transition to SPMS remain able to walk. This includes walking with the use of a cane or a walker. Some people with SPMS choose to use a wheelchair or scooter for long distances. These ability aides may be used sometimes or all the time, depending on the severity of your condition.

Talking to Your Doctor About SPMS

Working closely with your provider is critical, regardless of the type of MS you’ve been diagnosed with. Being able to describe the course of your disease helps you and your MS care provider discuss your treatment options and expected outcomes.

If you have MS, your communication with your provider should be ongoing and include continued monitoring. Keep your follow-up appointments and ensure your doctor performs regular testing, like neurological exams and MRI scans. It is recommended that people with MS have an MRI at least once per year.

You can improve communication with your health care team by keeping a close eye on your own symptoms. For instance, you can track your symptoms daily or weekly in a journal to help you notice subtle changes over time. Learn more about how to talk to your doctor about MS.

Newly Diagnosed With SPMS? You Are Not Alone

Getting the news that your MS has transitioned from RRMS to SPMS can be difficult. The fact that there is so much variability in the diagnosis, symptoms, and prognosis of SPMS can be scary. A community of support is more important than ever.

MyMSTeam is a community of people living with MS who offer each other guidance, education, and support. In fact, there are more than 8,600 people with SPMS on MyMSTeam.

Have you noticed a change in your MS symptoms? Has your MS transitioned? Did you recently make a change to your MS treatment as a result of your SPMS diagnosis? Leave a comment below or join a conversation on MyMSTeam today.

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References

Multiple sclerosis (MS) is a condition that damages nerve cells in your central nervous system (CNS).

Your CNS is composed of your brain, spinal cord, and optic nerves.

MS causes symptoms that gradually get worse, as well as symptoms that come on suddenly after a period of being controlled. This sudden appearance of symptoms is called a relapse.

There’s no cure for MS, and the damage it causes can’t be reversed. However, certain medications can help you manage the condition.

Condition management focuses on medication that can treat relapses, as well as modify the disease to reduce damage and disability. It also involves other drugs that treat the symptoms or complications of MS.

Understanding disease-modifying therapies (DMTs)

There are several types of DMTs that work to help change the course of MS. The length of treatment with these medications can range from a few months to years, depending on how effective the medications are for you.

Your doctor may recommend switching between these drugs throughout the course of your treatment. This will depend on how effectively each drug manages your disease and how you tolerate the side effects.

If you switch to a different DMT, your doctor will take note of whether you develop new lesions.

Injections and infusions

The Food and Drug Administration (FDA) has approved 12 MS medications that are administered by injection or infusion.

Interferon beta products

Injectable drugs include:

• interferon beta-1a (Avonex, Rebif)
• peginterferon beta-1a (Plegridy)
• interferon beta-1b (Betaseron, Extavia)

They help modify relapsing-remitting MS (RRMS) and secondary progressive MS (SPMS) in cases of active disease — that is, a relapse has occurred or new lesions have appeared on an MRI scan.

They also treat clinically isolated syndrome (CIS), a one-off episode of neurological symptoms. CIS can progress to MS and is sometimes categorized as a type of MS.

These drugs are made up of proteins that keep certain white blood cells (WBCs) from entering your brain and spinal cord. These WBCs are thought to damage the myelin that forms a protective coating over your nerve fibers.

Therefore, preventing these WBCs from moving into your brain and spinal cord can help slow their damage and reduce the number of relapses you have.

You inject these drugs yourself. Your healthcare provider will show you how to do this. The number of injections depends on the drug:

• Rebif: three times per week
• Betaseron: every other day
• Extavia: every other day
• Avonex: once per week
• Plegridy: every 2 weeks

Glatiramer acetate (Copaxone)

Glatiramer acetate (Copaxone) is a manufactured substance that resembles a basic protein of natural myelin. It’s thought to work by prompting the WBCs to attack the substance instead of the myelin cells.

It’s used to treat RRMS and SPMS in cases of active disease — that is, a relapse has occurred or new lesions have appeared on an MRI scan. It can also treat CIS.

You inject this drug yourself once per day or three times per week, depending on your dosage. Your healthcare provider will show you how.

People who receive injections three times per week should ensure that at least 48 hours elapses between their injections.

The FDA has also approved Glatopa, a generic form of Copaxone.

Natalizumab (Tysabri)

Natalizumab (Tysabri) is an antibody that may block damaged T lymphocytes from moving into your brain and spinal cord.

It’s used to treat RRMS and SPMS in cases of active disease — that is, a relapse has occurred or new lesions have appeared on an MRI scan. It can also treat CIS.

A healthcare provider gives you this drug as an intravenous (IV) infusion. The infusion takes about an hour, and you’ll get it every 4 weeks.

Mitoxantrone hydrochloride

Mitoxantrone hydrochloride was originally used to treat cancer. Now it’s also prescribed to treat people with MS. It suppresses the immune system cells that are thought to attack myelin cells. This medication is only available as a generic drug.

It’s used to treat SPMS or worsening RRMS in instances where other drugs haven’t worked. It has a high risk of serious side effects, so it’s only appropriate for people with these more severe forms of MS.

A healthcare provider gives you this drug as a short IV infusion once every 3 months. The infusion should only take 5 to 15 minutes.

Alemtuzumab (Lemtrada)

Alemtuzumab (Lemtrada) is approved for people with relapsing forms of MS, including RRMS and active SPMS. It’s intended for people who’ve tried at least two other MS medications but found that treatment was unsuccessful or caused intolerable side effects.

It works by reducing the number of specific B and T lymphocytes in your body. This action may decrease the inflammation of and damage to nerve cells.

Alemtuzumab is given as a 4-hour IV infusion. To start, you receive this drug once per day for 5 days. Then 12 months after your first treatment course, you receive it once per day for 3 more days.

Ocrelizumab (Ocrevus)

Ocrelizumab (Ocrevus) is the newest infusion treatment for MS. It was approved by the FDA in 2017.

It’s the first drug used to treat primary progressive MS (PPMS). It’s also used to treat CIS and relapsing forms of MS.

Ocrelizumab appears to work by targeting and ultimately reducing the number of B lymphocytes. B lymphocytes are responsible for damage and repair of the myelin sheath.

Ocrelizumab is given as an IV infusion. To begin, you’ll receive it in two 300-milligram (mg) infusions, separated by 2 weeks. After that, you’ll receive it in 600-mg infusions every 6 months.

You’ll also receive a corticosteroid and an antihistamine on the day of each infusion to reduce the risk of reaction to the medication.

Ofatumumab (Kesimpta)

Ofatumumab (Kesimpta) was approved by the FDA in August 2020 and is the newest treatment for MS.

It’s used to treat RRMS and SPMS in cases of active disease — that is, a relapse has occurred or new lesions have appeared on an MRI scan. It can also treat CIS.

Like ocrelizumab (Ocrevus), it also works by targeting harmful B lymphocytes and reducing their overall number.

Ofatumumab is given as an injection once per week for the first 3 weeks. After a 1-week break, the drug is given as a monthly injection.

Oral medications

The FDA has approved eight oral medications for the treatment of MS.

Fingolimod (Gilenya)

Fingolimod (Gilenya) comes as an oral capsule that you take once per day.

It was the first oral medication approved by the FDA to treat RRMS. It’s also used to treat CIS and active SPMS.

Fingolimod causes the damaging WBCs to remain within your lymph nodes. This reduces the chance that they’ll enter your brain or spinal cord and cause damage.

Teriflunomide (Aubagio)

Teriflunomide (Aubagio) is an oral tablet that you take once per day.

It’s used to treat RRMS and SPMS in cases of active disease — that is, a relapse has occurred or new lesions have appeared on an MRI scan. It can also treat CIS.

Teriflunomide works by blocking an enzyme that’s needed by the damaging WBCs. As a result, teriflunomide helps decrease the number of these cells, which reduces the damage they can inflict.

Dimethyl fumarate (Tecfidera)

Dimethyl fumarate (Tecfidera) is an oral capsule that you take twice per day.

It’s used to treat RRMS and SPMS in cases of active disease — that is, a relapse has occurred or new lesions have appeared on an MRI scan. It can also treat CIS.

The exact mechanism of this drug is unknown.

It appears to work by interfering with the activity of certain immune system cells and chemicals to reduce the risk of MS relapse. It may also have antioxidant properties that help protect against brain and spinal cord damage.

Monomethyl fumarate (Bafiertam)

Monomethyl fumarate (Bafiertam) is an oral capsule that you take twice per day. It’s the newest oral drug on the market, having been approved by the FDA in April 2020.

It’s used to treat RRMS and SPMS in cases of active disease — that is, a relapse has occurred or new lesions have appeared on an MRI scan. It can also treat CIS.

Monomethyl fumarate is a bioequivalent of dimethyl fumarate (Tecfidera). Like dimethyl fumarate, monomethyl fumarate may have antioxidant properties and appears to work by interfering with the activity of certain immune system cells and chemicals.

Cladribine (Mavenclad)

Cladribine (Mavenclad) is a pill that you take for a total of 16 or 20 days over the course of 2 years. You’ll have treatment for 2 weeks per year, with each one lasting 4 or 5 days. There’s a 1-month break in between the 2 weeks of treatment.

It’s approved for people with relapsing forms of MS, including RRMS and active SPMS. It’s intended for people who’ve tried at least one other MS medication but found that treatment was unsuccessful or caused intolerable side effects.

It may work by reducing the number of harmful B and T lymphocytes that you have.

Siponimod (Mayzent)

Siponimod (Mayzent) is an oral tablet that you take once per day.

It’s used to treat RRMS and SPMS in cases of active disease — that is, a relapse has occurred or new lesions have appeared on an MRI scan. It can also treat CIS.

It’s believed to work by blocking certain inflammatory cells from leaving your lymph nodes. This action limits the amount of nerve damage that they can inflict.

Diroximel fumarate (Vumerity)

Diroximel fumarate (Vumerity) is an oral capsule that you take twice per day.

It’s used to treat RRMS and SPMS in cases of active disease — that is, a relapse has occurred or new lesions have appeared on an MRI scan. It can also treat CIS.

Diroximel fumarate has the same active ingredient as dimethyl fumarate (Tecfidera), and it works the same way. This means that it may also have antioxidant properties and interfere with the activity of certain immune system cells and chemicals.

Ozanimod (Zeposia)

Ozanimod (Zeposia) is an oral capsule that you take once per day.

It’s used to treat RRMS and SPMS in cases of active disease — that is, a relapse has occurred or new lesions have appeared on an MRI scan. It can also treat CIS.

It’s believed to work by blocking immune cells from leaving your lymph nodes and entering your CNS.

MS medications for children

Fingolimod (Gilenya) is currently the only DMT that’s approved by the FDA for use in children. It’s safe for use in people ages 10 years old and up.

However, doctors may prescribe other DMTs off label.

Medications for MS relapses

While many relapses go away on their own, more severe relapses require treatment.

Inflammation causes MS relapses, and it’s typically treated with corticosteroids. These drugs can reduce inflammation and help make MS attacks less severe. Corticosteroids used to treat MS include:

• dexamethasone (Dexamethasone Intensol)
• methylprednisolone (Medrol)
• prednisone (Prednisone Intensol, Rayos)

If corticosteroids don’t work, your doctor may prescribe corticotropin (H.P. Acthar Gel).

Corticotropin is an injection, and it’s also known as ACTH gel. It works by prompting the adrenal cortex to secrete the hormones cortisol, corticosterone, and aldosterone. The secretion of these hormones helps to reduce inflammation.

Medications to treat MS symptoms and complications

Other drugs can be used to treat specific MS symptoms or complications from MS-related damage.

For walking problems

Dalfampridine (Ampyra) is an oral tablet taken twice per day to help improve walking.

Dalfampridine works by blocking potassium channels, which form tiny pores in your nerve cells. This action may help damaged nerve cells to better send messages.

Improved nerve impulse conduction aids in leg muscle control and strength.

For muscle stiffness or spasms

A doctor will often give muscle relaxants to people with MS who have painful muscle stiffness or muscle spasms. Drugs commonly used to treat these symptoms include:

• baclofen (Lioresal)
• cyclobenzaprine (Amrix)
• dantrolene (Dantrium)
• diazepam (Valium)
• onabotulinumtoxinA (Botox)
• tizanidine (Zanaflex)

For fatigue

Ongoing fatigue is a common problem for people with MS. For this symptom, your doctor may prescribe a drug such as modafinil (Provigil).

They may also prescribe an off-label drug, such as amantadine (Gocovri) and fluoxetine (Prozac).

For dysesthesia

Dysesthesia means “bad sensation.” It’s a type of pain that can feel like ongoing burning or itching. It may also feel like wetness, electric shock, or pins and needles.

To treat dysesthesia, your doctor may prescribe:

• amitriptyline
• clonazepam (Klonopin)
• gabapentin (Neurontin)
• nortriptyline (Pamelor)
• phenytoin (Dilantin)

For depression

According to a 2014 articleTrusted Source published in Nature Reviews Neurology, some research has shown that people with MS are more likely to be clinically depressed than the general population.

Drugs used to treat depression in people with MS include:

• bupropion (Wellbutrin SR, Wellbutrin XL)
• duloxetine (Cymbalta)
• fluoxetine (Prozac)
• paroxetine (Paxil)
• sertraline (Zoloft)
• venlafaxine (Effexor)

For constipation

Constipation is another common complication of MS. Your doctor may recommend treating it with one of the following over-the-counter drugs:

• bisacodyl (Dulcolax)
• docusate (Colace)
• magnesium hydroxide (Phillips’ Milk of Magnesia)
• psyllium (Metamucil)

For bladder dysfunction

Bladder dysfunction is also a common complication of MS. Symptoms may include frequent urination, incontinence, or hesitancy in starting urination. You may also experience frequent nocturia (nighttime urination).

Drugs to treat these symptoms include:

• darifenacin (Enablex)
• oxybutynin (Ditropan XL)
• prazosin (Minipress)
• solifenacin (VESIcare)
• tamsulosin (Flomax)
• tolterodine (Detrol)

For sexual dysfunction

Both men and women with MS tend to have higher rates of sexual dysfunction than the general population, according to an international cross-sectional studyTrusted Source from 2016.

Oral medications that may be prescribed to help treat erectile dysfunction (ED) include:

• sildenafil (Viagra)
• tadalafil (Cialis)
• vardenafil (Levitra)
• avanafil (Stendra)

Older drugs that must be injected directly into the penis are also available. These drugs aren’t used as much now that oral drugs are available.

They include alprostadil (Caverject). A drug that may be used off label for this purpose is the blood pressure medication papaverine.

People with a vagina or clitoris may experience problems such as reduced feeling or vaginal dryness.

There are no drugs currently available to treat these problems. However, for vaginal dryness, you can use water-soluble personal lubricants available over the counter.

Talk with your doctor

Many different types of drugs are available to help you manage MS. The type of drugs that may be best for you depend on the type of MS you have and the symptoms you experience.

You may not be able to access all of these medications. Ask your doctor to confirm which drugs are currently on the market in your area and which ones might be most appropriate for you. Speaking with your doctor is especially important if you’re pregnant or planning to become pregnant.

Work with your doctor to create a plan to manage your MS symptoms and help prevent further damage from the disease. Sticking to your treatment plan can help you feel better and slow the progression of your condition.

Fashion is a way to express yourself. 

Adding a few new pieces to your closet is a way to relieve and re-energize everything. It’s a way I express myself to the world, making me feel alive and confident. 

Me (Terry) and Tamara were diagnosed with multiple sclerosis at the age of 27, and on Twincast2coast, we share our stories and thoughts to spread awareness and help lift people with related chronic illnesses to live a happy and healthy life. 

While we are very different individuals, we share the same outlook on life! We like to dress up and be comfortable while looking stylish. While the fast-paced fashion industry with new trends and fashions makes me think that fashion labels and designers may not be as aware of physically disabled people’s needs and requirements. Fashion labels and designers are moving on a single track that is meant for selected body types. 

It’s not just that physically able people enjoy wearing stylish clothing, but people with disabilities also appreciate wearing comfortable yet stylish clothing designed specifically for their lifestyle.

This raises an important question- Are there enough adaptive clothing brands for people with disabilities, and what changes are brands making to expand and fulfill the requirements of disabled people? 

Come on, let’s find out!

Changes are Sweeping the Fashion Industry 

 A small number of brands produce adaptive and comfortable clothing for disabled people. Tommy Hilfiger, Zappos, Ffora, Slick Chicks are examples of some of the adaptable clothing line brands that keep the wants and needs of consumers at the heart of their designs and offer a wide selection.  

I believe Tommy Higfiler’s initiative to start with children and later expand to adults and all types of disabilities were thoughtful and smart. It was a smart move to start with children and expand to other categories.  

“Tommy Adaptive’s mission is to be inclusive and empower people of all abilities to express themselves through fashion,” the company said in a press release.

Besides providing clothing for people with special needs, the brand also runs advertisements and campaigns with the help of disabled personalities like dancer Chelsie Hill and motivational speaker Mama Cax. 

The company does not just design clothing, but also tries out new things and aligns with the values and mission of the clothing by running advertisements with models that speak to the targeted niche and enhance their sense of confidence and style. 

What sets this brand apart from others is the fact that they are receptive to customer feedback, filling in the gaps and creating adaptive clothing. 

Yet there remains a huge gap in terms of experimentation and style, which still needs to be filled in order to create stylish outfits. 

The changes that must be made- 

A number of brands have started expanding their clothing lines to cater to disabled consumers or creating clothes that can be worn by both non-disabled and disabled consumers. Here are a few points that I believe need to be changed to bring change in the industry and overall public view. 

Using Disabled Models

Brands can use disabled models to market clothing to target the right audience, connect with them and catch their eyes. Utilizing social media platforms like Instagram and YouTube to promote a product is a good idea. 

Valuing Open-Mindedness

Designers need to be open-minded when designing clothes, as the clothes speak of your personality and so does the thought process of the designer. 

Changing The View Of Functional Clothing

Individuals with disabilities are often labeled ugly and unsightly and people think they feel the same about themselves. This makes the designer design functional clothing with a view that disabled people are meant to conceal, cover, and create illusions that are not intended to be seen by the public. Therefore, this approach is not the best way to portray the collective image of the disability community to the general public. 

Challenging The Assumptions

Designers have some specific assumptions about the sort of people who will wear the clothes; certainly not people with wheelchairs or other mobility devices. Designers who do consider the physical disabilities will focus more on the function than on the form of the dresses.  

Trying to find the right garment for the rack and adjusting it by making some small changes is a constant struggle. 

Disability does not make people less interested in fashion. They are updated with the most recent fashion trends just like any other person and would love to pull it off.

How to choose the right clothes for you?

With these five major tips, you will be able to pick the right type of clothing and discover some options you may not have known about. 

Fabric 

The fabric of the cloth plays a crucial role for any type of dress, the length of the dress matters, and the fabric should be skin-friendly. I find maxi dresses to be elegant and comfortable but I would like to have less fabric in them as they are difficult to manage (as the extra cloth may get caught up in the wheelchair). 

Comfort in dressing 

Clothes should be comfortable and stylish, as they should be easy to slip on and off without too much strain on the body parts. For people in wheelchairs, the shoes should be light, anti-skid soles, adjustable straps, long shoelaces, and pull tabs so that they can easily wear and remove them. 

Reducing mobility 

The clothing should include easy-access snaps, fabrics that stretch easily, and convenient designs for elderly and disabled people. An example would be a large neck and loose-fitting arms, pants with a side zipper, elastic that is loose or adsorbable, and magnetic closures instead of zippers. 

Home try offers for online shoppers  

Look for options for a home trial so you are free from the hassle of returns and refunds and can pick the right fit. You can try on clothes and dress comfortably with brands like Mmlafleur. 

Detailed descriptions

An in-depth description helps to determine if a particular style of clothing is suitable for the wearer. Also, featuring ambulatory and disabled models for the product will help the buyer to pick the right outfit with ease and realistic depiction.

Final Thoughts 

It’s hard for designers to create and sell chair fashion but the opportunities are humongous to fill the gap and come up with phenomenally creative and stylish dresses that can be fitted to any body type and bring about a revolution.