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Is there anything fun about an MRI?

Anyone who has been challenged to lie still for an hour in an MRI machines knows it’s not usually a pleasant experience!

Tick-tock, click, clatter and pounding noises are the wonderful sounds you hear for an hour or more. Tamara and Terry have had multiple MRIs on an annual basis for more than 25 years – so for them, the highlight is being able to take a nap!  As pros, they’re able to relax during this procedure that can be challenging for anyone who might be claustrophobic.

One may ask – Why do doctors suggest MRIs for people with Multiple Sclerosis?

MRI stands for Magnetic Resonance Imaging. This procedure uses magnets and radiowaves to create pictures of the body. These pictures allow doctors to look for scarring on the brain or spinal cord that could not be discovered using other medical tests. MS scars can show up as bright or dark spots. An MRI can also show active inflammation and help doctors determine the age of the lesions.

On an MRI film, the brain of a person with MS looks similar to a butterfly. It’s one of the reasons the twins use butterflies in their social media posts. As a symbol of transformation, hope and faith, it’s a wonderfully optimistic representation for MS patients everywhere.

Medical

Traveling to Puerto Vallarta, Mexico

Tamara and Terry recently traveled to Puerto Vallarta, Mexico. Exploring international locations can be challenging (especially when you’re traveling with a 350 lb wheelchair!) but with some planning, MS doesn’t get in the way of taking wonderful trips.

How do I plan accessibility travel in advance with the airlines?

The twins have found that airlines are very accommodating with assistance on and off the plane, but it’s important to call the airline’s disability line to discuss your specific needs before you book.  Airlines do their best to help you have a comfortable traveling experience but planning is key to a successful trip.  

Alaska Airlines

Tamara had a very good experience flying Alaska Airlines to Mexico.  Here’s some of the resources she used:

Delta Airlines

Based in Atlanta, Terry often flies on Delta, as she did on this trip. While she has had mostly positive experiences, there has been some minimal damage to her wheelchairs on previous trips but Delta has worked with her to get them repaired.  Delta has several online resources to help with accessible travel:

Your rights 

Even with the best planning, sometimes things don’t go as planned.  As a disabled traveler, It’s important to understand your rights as established by the US Department of Transportation.  You can familiarize yourself with the Airline Passengers with Disabilities Bill of Rights 

Arrival in Mexico.the adventure continued

When they landed, both Tamara and Terry needed their wheelchairs to get to the terminal. Tamara is strong enough to sit in a normal wheelchair and was able to use the airline’s “meet and assist” service to get through passport control and to baggage claim.

Terry’s experience was different as her upper body is too weak to allow her to use a typical wheelchair. While the baggage handlers did their best to remove the chair from the cargo hold of their plane, Terry’s husband (Allen) ultimately needed to join them on the tarmac to help. He was able to provide directions on how to move the wheelchair out of the aircraft and then drove Terry’s wheelchair back to the gate. It’s just a reminder of the unexpected that can happen when you travel, so remember to pack your patience and a positive attitude!  

Return Flight

Given the challenges in getting Terry’s wheelchair off the plane when they arrived in Mexico, Stephen (Tamara’s husband) and Allen proactively went down to the tarmac to help the baggage handlers load the wheelchairs for their return flights. The good news is both the twins and their wheelchairs made it home safe and sound!

What are some tips for accessibility travel?

Plan ahead with your airline

  • Review the airline’s policy for disabled travelers before you book.
  • Keep a list of topics to share with the travel agent when booking your trip. While those details should be included with your reservation information, it’s helpful to keep a list for the gate agent, too.  
  • Ask your gate agent if the ground crew has any questions about how to load and unload your wheelchair or other device.  Large wheelchairs are heavier than luggage and other typical cargo, so they may need instructions on the power or battery.  
  • Most other assistive devices such as walkers and small, lightweight scooters can be left at the end of the jetway and be placed underneath the aircraft by the ground crew.

Plan ahead with your hotel/resort

  • Call the property ahead of time to let them know what you’ll need. For example, will you need a handicap-accessible room, a bathroom chair, or a ramp to a patio or porch?
  • Ask if there are handicap pathways and transportation throughout the property where you’ll be staying.  If not, you may want to find another place to stay! 

Where did Tamara and Terry stay in Mexico?

Tamara and Terry stayed at Vidanta in Nuevo Vallarta. The resort was beautiful and had multiple handicap-accessible walkways, restaurants and rooms. The resort staff was incredibly helpful and did everything they could to make it a special trip for the twins.

Tamara and Terry’s trip shows that with a bit of planning, it’s possible to travel almost anywhere.  Living with MS isn’t always easy, but it shouldn’t stop you from traveling with family and friends and exploring new destinations.  Stay positive, be patient and enjoy! Bon Voyage!

MS The Good, The Bad, The Funny

“The smiles are real, but so are the struggles of living with MS.”

Twins Coast 2 Coast

Tamara & Terry agree – “Multiple Sclerosis kicked our asses in 2022!”

As MS advocates who share our honest and authentic life experiences living with a chronic disease, we enjoy sharing the good, the bad and the funny of our MS journey. Before we look back at 2022, we’d first like to thank all of our social media followers, friends and family for all of your love and support through the year. 

Everyone reading this blog has challenges and a story to tell. These life events may take many different forms and the expression may be unique to the individual on his or her journey.Through TwinsCoast2Coast, we have invited people into our lives and journeys. It’s important to us that we be transparent and real to our audience. We have often thought of this journey as “The Good, The Bad and The Funny.”

Let’s start out with “The Good” of the past year.  We launched our Mirror Image Madness podcast and completed 16 podcasts. We had wonderful guests, discussing a wide variety of issues affecting individuals with MS.  This included interesting and exciting members of the MS community, health care professionals and national organizational movers and shakers.

Our blog featured posts on exciting new therapies and equipment to help support the individual with MS including the Lokomat exoskeleton, Vasper fitness technology and the newly FDA approved Cionic neural sleeve. 

We were involved with several high profile events. These included Nancy Davis’ “Race to Erase MS” Gala in Los Angeles.  The funds from this event support the “Center Without Walls” program, a network of the top MS research institutions across the country.  By working together as a team and sharing their findings, the hope is for these institutions to collectively find a way to eradicate MS.  

Terry attended the launch of Botanical Sciences, one of Georgia’s first medical cannabis companies, with founder Dr. Robin Fowler. Montel Williams, one of our podcasts guests was also in attendance. Botanical Sciences donated $5000 in honor of TwinsCoast2Coast to the National MS Society Georgia Chapter as recognition of the consulting she has done for the company..

Tamara led a West coast TwinsCoast2Coast event, partnering with AXR winery of Napa California for a wine tasting and fundraising event. One of the founders of the winery, Kelly Trevethan, was kind enough to attend and donate a percentage of proceeds to help support our nonprofit mission. 

Tamara and Terry were interviewed for The Motivator: MSAA’s national magazine (Summer/Fall 2022 edition.) The magazine explores issues affecting people with MS. The twins discussed a wide range of topics including the impact of aging with MS.

We also realized a childhood dream when we were asked to model in a campaign for EQL Threads. This adaptive wear clothing company provides sustainable fashion with hidden adaptive features that allow for comfort and mobility.

Unfortunately, 2022 included “The Bad.” Terry contracted a severe case of shingles which stimulated trigeminal neuralgia, a disorder that causes sudden and unbearable facial pain. She underwent gamma knife  surgery in order to treat the neuralgia. The episode was emotionally draining and scary for Terry and the entire family.

Tamara’s MS progressed to the point that she needed the daily use of a wheelchair. While a challenging transition, a wheelchair does offer more comfort and stability throughout the day.  Now that we both have wheelchairs, we realized we can be called “rolling ambassadors” for the MS cause!

And “The Funny?”  A good sense of humor is a necessity when dealing with the uncertainties that come from living with MS.  Along the way, we realized that MS also stands for Mighty Sisters!  Through it all, we are thankful for each other and continue to find joy and meaning in life.  

Wishing everyone a Happy New Year!!

Hugs, 

Tamara And Terry

Uncategorized

A Rough Medical Patch

Terry’s Gamma Knife Procedure

October, 2022

Wow, who would’ve known how challenging the Fall would be for Terry? Here’s her story –

In early September I was on vacation celebrating my husband Allen’s birthday. We were driving from Tennessee to Kentucky to see his extended family and meet his newest granddaughter. Allen noticed a bump on my face but didn’t think anything about it before we went to dinner.

The next morning, I knew in Allen‘s eyes something was terribly wrong with my face. He looked at me and said “I think you have shingles.” I was no stranger to shingles, as I had them almost 4 years ago in September, 2018. That time it was on my back, a mild case and I had no feeling in my back so it was a relatively minor episode. But now I had terrible shingles on the left side from my hairline across my forehead and down to my eyelid. It was extremely painful for over 3 weeks. The sores during the first two weeks made me feel like a monster. The worst was my eyelid – it felt like it had a rock on it.

Just when I was looking forward to feeling (and looking) better, I experienced the worst pain I’ve ever felt. The pain went through the shingles from my forehead, around the eye, down my nose, into my cheek. I am a tough girl and normally handle my pain but this time I had to have somebody hold my hand and rub it while I was going through each excruciating episode. They lasted 5 to 6 minutes or more each time and seemed to happen every hour. This lasted three weeks until the doctors were able to figure out the right medications. Although they started with narcotics, the drugs did nothing to alleviate the neuropathic pain. Good news is there are neuropathic pain medicine out there that treats this.

In late October I met with my neurosurgeon who decided Gamma Knife radiosurgery would be best for me. This is a type of radiation therapy used to treat tumors, cancers and other abnormalities in the brain. Although it’s referred to as surgery, there isn’t any incision. Instead the doctors use a CT machine to send hundreds of tiny beams of radiation in a focused way to kill the targeted nerves. I’ll admit it was a scary experience, but my pain decreased almost immediately and I only had mild pain for 3-4 weeks after the surgery.

Moral to the story – to anyone with an auto immune disease – please talk to your physician and confirm you’re up to date with your shingles vaccine!

Tamara and Terry

Twins Coast To Coast


This was the beginning of the shingles episode.
On my way to the gamma knife treatment.
Nurse getting everything ready for the procedure.
Getting ready to go into the MRI machine to receive radiation
Dr. Pollard Radiation (Oncologist) and Dr. McCracken (Neurosurgeon) who both treated me for the trigeminal nerve procedure.
Finished with the procedure – after 41 minutes in the CT machine receiving radiation to the trigeminal nerve.
All done and pictured with the nurses and Dr. Pollard.
Medical

Bionic Clothing?

The Cionic Neural Sleeve – The first bionic clothing for mobility impairment


How It Works

The Cionic Neural Sleeve analyzes, predicts, and augments a person’s movement. It uses a dense array of sensors to measure how the body is positioned and how individual muscles fire during movement, predicts intended movement by measuring the electrical signal from the brain, and then algorithms analyze this data in real time to determine optimal muscle activation patterns. The Neural Sleeve then delivers Functional Electrical Stimulation to sequence proper muscle firing for natural movement. It is an adaptive system that provides real-time augmentation and adjustment of the wearer’s movement, updating each time they take a step.

About CIONIC

CIONIC is committed to changing the lives of people with mobility differences by helping them move more independently. Motivated by his daughter’s journey with cerebral palsy, technology innovator Jeremiah Robison founded CIONIC in 2018. CIONIC builds bionic clothing that can analyze and augment human movement, enabling the body to move with more freedom and control than with crutches, walkers, or wheelchairs. CIONIC thoughtfully combines the diagnostic power of a gait lab with the therapeutic power of Functional Electrical Stimulation (FES) into a lightweight, durable garment that can be worn anywhere and work everywhere. CIONIC endeavors to exceed the expectations of human capability and change the lives of people with mobility differences and the lives of their loved ones by helping them move with greater confidence and independence. For more information, please visit cionic.com

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How to Support a Loved One Living with A Chronic Illness or Chronic Pain

By Allen Hord, MD 

Battling chronic pain is an obvious challenge for those who suffer from it. But it also impacts those around them — especially their concerned loved ones. Knowing how to provide support can be complex to navigate, but may provide a crucial coping mechanism. 

At Alliance Spine & Pain Centers, we are dedicated to resolving problems for the whole patient, which includes their loved ones. Here are some ways you can help your loved one. 

BE UNDERSTANDING

“You can’t completely understand your partner’s pain, but you can listen and learn,” recommends MigraineAgain. “Just knowing what they’re going through can make it easier for both of you to handle the ups and downs.” Staying patient, being adaptive, and arming yourself with information are all things you can do to assist everyone caught in the web that chronic pain can spin. 

THE POWER OF POSITIVE PHYSICAL TOUCH

Positive physical touch is good for both your mood and your spirit, according to one study in the Western Journal of Communication. The Journals of Gerontology also indicates that experiencing close physical contact, such as hugging, receiving a pat on the back, or getting a gentle neck massage, can yield higher oxytocin levels.

Why is that important? Oxytocin has the ability to undo the potential negative effects of the stress hormone cortisol. When imbalanced by stress, higher levels of cortisol can add to widespread inflammation, and increased pain. This cycle may put the body in a state of continual fight or flight that makes it even harder to find relief

So when you’re at a loss for what else to do, offer some positive touch. 

WHAT (NOT) TO SAY

Words have the power to both help and harm, especially when the listener may already be struggling with stress, depression, physical discomfort, or changes in lifestyle their chronic pain may cause. Being mindful of your words can make a difference.

  • Be cautious of “toxic positivity” that’s intended to help but may come across as dismissive. “It could be worse,” is one example of this. 
  • Put the emphasis on validation
    • “Saying ‘I understand that *insert chronic illness* can be debilitating. I can’t imagine what it’s like, but I am here to support you in your journey” is what CreakyJoints recommends. Commending them on what they are doing may also prove helpful.
  • Recommending solutions is nice of you, but could be interpreted as an insult. Instead of saying “Have you tried (fill in the blank recommendation),” Duke University’s The Chronicle suggests leave it at something like, “Explore this information if you want to.” 

KEEP UP THE ENGAGEMENT

Though someone suffering chronic pain may not always feel “normal,” they still want to be. Remain respectfully aware of their limitations, but invite them to outings and activities. If they can’t attend (or have to cancel at the last minute), remember not to take it personally. Stay engaged in their lives and keep them engaged in yours, too. 

Find alternatives to the tasks they can’t easily perform. “Perhaps they can no longer do yardwork, but they may still be able to help with cooking, setting the table, washing the dishes, caring for children, handling family finances, making phone calls or shopping by phone,” The New York Times recommends. “Feeling useful can bolster a patient’s self-esteem and mood.”

Taking care of yourself is as important as tending to your loved one. And we’re here to help. If you need guidance for a loved one’s pain management plan, we encourage you to schedule an appointment by calling 770-929-9033 or reaching out to us online.

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Signs & Symptoms of Secondary Progressive Multiple Sclerosis


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.

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.

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? Join a conversation on MyMSTeam today.


References

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Multiple Sclerosis (MS) Drugs

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.

Medical

Discovery Of New Cell May Be Key To Treating Incurable Neurological Diseases

COLUMBUS, Ohio – Research led by investigators at The Ohio State University Wexner Medical Center provides new hope for recovery from degenerative neurological diseases — such as ALS and multiple sclerosis — as well from as damage caused by traumatic brain and spine injuries and stroke. 

Using a mouse model, researchers at Ohio State and the University of Michigan discovered a new type of immune cell that not only rescues damaged nerve cells from death, but partially reverses nerve fiber damage. The research team also identified a human immune cell line, with similar characteristics, that promotes nervous system repair.

Study findings are published in the journal Nature Immunology.

“This immune cell subset secretes growth factors that enhance the survival of nerve cells following traumatic injury to the central nervous system. It stimulates severed nerve fibers to regrow in the central nervous system, which is really unprecedented,” said Dr. Benjamin Segal, professor and chair of the Department of Neurology at The Ohio State College of Medicine and co-director of the Ohio State Wexner Medical Center’s Neurological Institute.  “In the future, this line of research might ultimately lead to the development of novel cell based therapies that restore lost neurological functions across a range of conditions.”

The cell discovered by these researchers is a granulocyte, a type of white blood cell that has small granules. The most common granulocytes, neutrophils, normally help the body fight off infection. The unique cell type resembles an immature neutrophil but is distinctive in possessing neuroprotective and neuroregenerative properties. It drives central nervous system axon (nerve) regrowth in vivo, in part through the secretion of a cocktail of growth factors.

We found that this pro-regenerative neutrophil promotes repair in the optic nerve and spinal cord, demonstrating its relevance across CNS compartments and neuronal populations. A human cell line with characteristics of immature neutrophils also exhibited neuro-regenerative capacity, suggesting that our observations might be translatable to the clinic,” said first author Dr. Andrew Sas, an assistant professor and physician scientist in the Department of Neurology at Ohio State. 

Researchers demonstrated the therapeutic potency of the immature neutrophils subset by injecting them into mice with crush injury to the optic nerve or lacerated nerve fibers in the spinal cord. Mice injected with the new neutrophil subset, but not more typical mature neutrophils, grew new nerve fibers. 

“I treat patients who have permanent neurological deficits, and they have to deal with debilitating symptoms every day. The possibility of reversing those deficits and improving the quality of life of individuals with neurological disorders is very exciting,” said Segal, who’s also director of Ohio State’s Neuroscience Research Institute and the Stanley D. and Joan H. Ross Chair in Neuromodulation. “There’s so much that we’re learning at the bench that has yet to be translated to the clinic, I think there’s huge potential for future medical breakthroughs in our field.”

The next step is to harness this cell and expand it in a lab to enhance its healing effects. Researchers hope these cells can then be injected into patients to improve function and mobility and slow or stop progressive neurological decline.

“Our findings could ultimately lead to the development of novel immunotherapies that reverse central nervous damage and restore lost neurological function across a spectrum of diseases,” Sas said.  

Financial support for this research was provided by the National Eye Institute,, National Institutes of Health, the Wings of Life Foundation, and the Dr. Miriam and Sheldon G. Adelson Research Foundation.