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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.

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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.
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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.

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Adaptive Clothing for Disabled Individuals – Be Confident and Stylish

Fashion has always been a way to express your style and personality. And 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. 

Tamara and I were diagnosed with Multiple Sclerosis at the age of 27, and on TwinsCoast2Coast, we share our stories and thoughts to spread awareness and help lift people with related chronic illnesses to live a happy and healthy life. 

adaptive clothing, terry and tamara, adaptive clothing brands

While we are very different individuals, we share the same outlook on life. We like to dress up and be comfortable while looking stylish. As our MS has progressed, it’s been challenging to find stylish and new fashions. The fashion industry doesn’t seem to be aware of physically disabled people’s needs and requirements. Designers seem to be moving on a single track that is meant for a few selected body types. 

This raises an important question- Are there 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, and Slick Chicks are examples of some of the adaptable clothing line brands that offer a wide selection of clothing, keeping the wants and needs of all their consumers at the heart of their designs .  

Tommy Higfiler’s initiative – Tommy’s Adaptive – started with adaptive clothing for children, a selection he later expanded to adults with all types of disabilities. His approach was both thoughtful and smart.

“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 approaches that align with the values and mission of the company. They have produced advertisements with models that speak to this targeted niche and enhance this community’s sense of confidence and style. They have been receptive to customer feedback, filling in the gaps and creating adaptive clothing. 

Yet there still remains a huge gap in terms of experimentation and style for non-traditional bodies.

Changes must be made 

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

Utilize Disabled Models

Brands should use disabled models to market clothing to target and connect with this audience. Utilizing these models on social media platforms like Instagram and YouTube are another way to normalize these models to all types of consumers.

Change The View Of Functional Clothing

Individuals with disabilities can be seen as unsightly and people may assume they feel the same about themselves. This makes the designer focus on incorporating less style into their functional clothing, assuming that disabled people want to conceal and cover themselves, almost hiding from the public. But being disabled is no reason to hide! People are people! Extroverts – whether they use a cane, crutches or a wheelchair – are still extroverts. And that may mean they prefer color and sparkles in their clothes. Functional clothing can and should be as stylish as non-adaptive clothing.  

Challenge The Assumptions

Designers might have some assumptions that the people who wear adaptive clothing aren’t interested in current fashions or trends. As a woman who loves bright colors and fashionable clothes, it’s a constant struggle to find current clothing styles that can be altered to fit my body and chair. But disability does not make people less interested in fashion. Many in the community would like to wear the latest trend, but why is it always up to us to remake today’s clothes to fit our lifestyle?

How to choose the right clothes for you?

These five tips will help you pick the right type of clothing – maybe you’ll discover some new options!

Fabric 

The fabric plays a crucial role for any type of dress, but the length of the dress may be more important if you are using a disability device. Fabric should always 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. For people in wheelchairs, shoes should be light and have anti-skid soles, adjustable straps, long shoelaces, and pull tabs so that they can be easily put on and taken off.

Reducing mobility 

The clothing should include easy-access snaps, fabrics that stretch easily, and convenient designs for elderly and disabled people. Large for relaxed necklines and loose-fitting arms, pants with a side zipper, elastic that is loose or adjustable, and magnetic closures instead of zippers. 

Home try offers for online shoppers  

Look for options that allow you to wear the clothing at home and with any medical devices so you can confirm you’ve made the right choice. Tommy Adaptive clothing can be found on TommyHilfiger.com. Other specialized brands include EQL Threads (site launching in late 2023.) Both JCPenney and Kohls also offer adaptive clothing – and Amazon is a great place to start your search.

Detailed descriptions

Look for in-depth descriptions to help determine if a particular style of clothing is suitable for you. Brands that use ambulatory and disabled models for the product can help you better understand the flow of the garments.

Final Thoughts 

I can imagine it’s challenging for designers to create and market adaptive fashion. Yet the disabled community is growing, and deserve to wear stylish, chic and affordable clothing. Let’s hope that more designers follow the lead of the few brands serving this market and we soon have more choices that make us look – and feel – fabulous!!

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Curious about Identical Twins? 8 Facts & Myths

As many of you know (unless you’re new here, in which case, nice to meet you!) Tamara and I (Terry) are identical twins. And being identical twins, we have gotten our fair share of questions and assumptions about twinhood over the years. 

There’s a lot of confusion about identical twins, what it actually means, and what’s the experience of living with someone who looks exactly like you!? While there’s a lot of information out there, it’s hard to tell twin facts from fiction. While some common twin myths do have some truth to them, others are entirely false. 

Today, we thought we’d take the chance here to identify common assumptions we get as identical twins, and if there’s any truth behind them. 

True or False?

twin myths, twin facts, identical twins, identical twin facts

1. Identical twins always get Multiple Sclerosis (MS) (or another chronic illness) if one of them is diagnosed

False

Yes, we both are living with Multiple Sclerosis (MS), but that isn’t always the case. There are plenty of twins out there that have not both been diagnosed with chronic illness. Actually, it MORE likely that only one twin will develop the illness.  

You may be asking, “But Tamra and Terry, MS is a genetic condition – right? Since your genetic makeup is the same, wouldn’t you both get the illness?”

Well, yes. That would be true if MS was completely genetic. Continuous studies are being done are the causes of MS. But right now, genes that have been studied have only been shown to increase the likelihood to a small degree. 

According to an Australian study in 2013, Identical twins have a 1 in 5 chance of both getting diagnosed with MS. 

2. Twins have the same DNA 

True – sometimes. 

This one is all about the difference between fraternal and identical twins. Can you guess which one shares the same DNA?

Yes! It’s identical twins. 

What makes twins identical isn’t necessarily how they look – it’s how they form in development. Identical twins come from the same egg, making their genetic makeup the same, while fraternal twins share half of their genes since they form from different eggs. 

BONUS FACT: 

Identical twins are always the same gender, and only fraternal twins can be different genders.

3. Having identical twins is genetic 

False

“I’m an identical twin and I have 2 brothers that are twins. Is our son having twins because of our background? Does it have to do with our genetics?”

-90% of curious identical twins

This is a question we get asked quite a bunch! However, there is no genetic component to the conception of identical twins. This is considered more of a fluke than caused by any genes in particular. So for me and Tamara, we aren’t any more likely to have identical twins than my non-twin husband. 

Now, if we were talking about fraternal twins, that would be a different story!

There is some genetic component to this, and they are actually 2.5 times more likely to have twins themselves.  

4. Identical twins share the same fingerprints

 False

Common misconception, but identical twins DO NOT share the same fingerprints. Fingerprints are unique to the individual person and no two people have the same, even if their genes are the same. 

However, there may be some similarities between the fingerprints of identical twins. According to Washington State, the loops and ridges of fingerprints could be very similar. 

Maybe it’s time for us to check out our fingerprints to see how similar they really are.  

5. Identical twins read each other’s minds 

Maybe?

This is a tricky one because personal experiences and science don’t always add up. But me and Tamara can definitely attest to some element of truth in this based on our experiences. 

When we were little,  we actually had our own language which our parents could not understand. It was like we had our own secret code! 

There were some downsides though – as it created a speech impediment in us as children. 

There was also other cool stuff we could do which showed us first-hand the powerful emotional connection between twins. When one of us was upset or had something weighing on our minds, the other could always tell – twin telepathy, if you will.  And when I was in the hospital at age 18, Tamara called our parents and realized I wasn’t getting the intensive care I needed. 

We’ve had a bunch of experiences like this over the years that we’ve heard similar stories from other identical twins time and time again. But there isn’t any scientific evidence right now that points to identical twins being able to read each other’s minds. 

So we’ll leave this one as a strong maybe. 

twin facts, identical twin facts, identical twin myths

6. Identical twins have the same personality

True

This identical twin myth is actually true – to an extent! That’s because the application of it really depends on whether or not the identical twins were raised in the same environment. 

For instance, countless studies have shown that identical twins are twice as likely to share personality traits as fraternal twins. 

But do similar traits mean identical twins will act the same? Not always. 

It comes down to the common nature/nurture debate of personality. While yes, nature and fact point to identical twins sharing personality traits, nurture affects what is seen. For example, if identical twins are raised in different environments but both are high on introversion, one may be raised in an environment where they are more encouraged to leave their comfort zone. 

If that’s the case, they may not show as many behaviors associated with introversion as twins raised by the same parents. 

The same is true for mannerisms – as they are impacted by both nature and nurture. 

As for me and Tamara, our personalities have developed a little differently even though we have similar traits and mannerisms. We use the same hand motions, same inflections in our voices when we speak, and have a very similar style in clothes and makeup. 

7. Parents always know when they are having identical twins 

False

Another myth we’ve heard is that the mother always has the knowledge of what type of twins she’s having

This may be more true today with the amazing advances of technology, but not when we were born! X-rays back then could only tell that the mother was having two babies, but not whether they were identical twins or not. So our mother actually had no idea if we were identical or fraternal twins, and neither did we. 

Actually,  for most of our lives, we didn’t even know if we were true identical twins. We always felt in our hearts that we were, but wanted to know for sure. A couple of years ago, we took a genetic test, and thankfully, matched as 100% identical. 

So although it’s more likely today, parents may not always be sure whether their babies are identical or fraternal!

8. Irish twins are true twins

False

Something we were asked often growing up is whether or not we were Irish twins and if Irish twins are true twins. 

Although this has the word “twin” in it – there’s a big difference between Irish and identical twins. 

Irish twins are those born within 12 months of each other, much unlike identical or fraternal twins. This term actually originated in the 1800s as a way to poke fun at Irish families who didn’t have access to birth control. 

However, that doesn’t mean that Irish twins aren’t sometimes treated like true twins. In fact, we had a lot of friends growing up that came to school dressed alike as Irish twins!

In Conclusion

There are plenty more myths about identical twins out there, and probably way more that’ll surface. But answers to these can give you an idea of the true definition of an identical twin!

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What’s Your Favorite Color?

Our favorite color was always red. We never would have guessed orange would become such an important color to us. Yes, orange is the color for Multiple Sclerosis awareness. Before MS, orange meant oranges, sunsets, or even prison uniforms. So even though we do not love the color orange, we embrace it and rock it with style. It will always be an important part and color in our lives.

From this quote below, we feel shows a great example of how we embraced Multiple Sclerosis and the color orange.