MS, Media & Hysteria

Selma Blair (Photo: Getty Images)

As many of you know, actress Selma Blair revealed, in a (poignant and brave) Instagram post, that she was recently diagnosed with Multiple Sclerosis. After 15 years of thinking she was suffering from a pinched nerve, she was finally diagnosed with MS in August.

Whenever a celebrity is diagnosed with MS, there’s a resurgence of interest in MS in the media. This, for many reasons, can be a bit triggering for those of us who suffer from MS. That’s another story for another blog post.

 

In any case, amid all of the MS hoopla, I came across an article in Women’s Health titled 15 Early MS Symptoms in Women that Shouldn’t Be Ignored. This is one of the most outrageous articles about MS that I’ve read in a long time. I guarantee that just about any woman, after reading this article, will second guess the myriad of general ass symptoms outlined in this article that she may be experiencing, and think that she has MS.

Being forgetful, clumsy, tired, feeling “weird sensations”, menstrual irregularity — all things that can mean just about anything — are not automatic indicators of MS. Further, the fluffy way that the author discusses and describes optic neuritis is laughable. The author writes, “If you previously had a good eye for color, don’t brush this off, Segil says. ‘It’s called optic neuritis and it happens because of a loss of insulation around the optic nerves in the brain; it’s one of the primary symptoms of multiple sclerosis,’ he explains.” Give me a damn break. Optic neuritis is way more than colors being off. Anyone who has ever experienced optic neuritis can attest to this.

This article is offensive.

Don’t get me wrong. I think it’s very important for people to be in tune with their bodies. And yes, I know that MS is one of the most elusive diseases to diagnose, but these fear tactics do not serve a useful purpose. If anything, they minimize the seriousness of these symptoms (fatigue, etc.) and the impact that they have on those who do suffer from MS.

At the end of the day, we should be grateful for any MS awareness I suppose. Let’s just be careful that the information that we are disseminating is accurate, avoids hysteria, and honors the very real experiences of those who live with this terrible disease.

My thoughts are with Selma Blair.

[ Episode 1 Recap ] Well, Hello!

Hello all, hopefully, you have been able to tune in and digest the information Daana & and I shared on the podcast. Let me first say THANK YOU! We appreciate the support from our listeners and are happy to provide you with a wide range amazing content.  Please note that neither one of us have experience in the podcast world so be gentle with us, we are bound to make mistakes as we move forward and perfect things. 🙂 Our goal is to keep you informed and engaged as we bring you future episodes.

Now that you have a bit more information, I wanted to kind of go back and provide you with a brief explanation on some of the words, or medical terminology that we mentioned.  I am sure that a few, if not all, of these words thrown at you, can be intimidating — especially for newly diagnosed individuals.

Let’s face it, Multiple Sclerosis is scary.  Particularly for people who have never had anything wrong with them other than a common cold.  Below, we are following up and providing you with brief definitions.  Note: please speak to a medical professional if you have any questions or concerns.  Our experiences allowed us to become quite familiar with many of the common terms and MS language.  Certainly, we welcome your questions, and hopefully, this will create an on-going dialogue with our subscribers and those following the blog.

Lherimette’s Sign: Symptoms of Lhermitte’s Sign. The main symptom ofLhermitte’s sign is an electric sensation that travels down your neck and back and also feels present in the arms, legs, fingers, and toes. The pain is usually strongest when you bend your neck forward. The shock-like feeling is often short and intermittent.  

Image result

Spinal Tap/Lumbar Puncture: lumbar puncture (also called a spinal tap) is a procedure to collect and look at the fluid (cerebrospinal fluid, or CSF) surrounding the brain and spinal cord.

During a lumbar puncture, a needle is carefully inserted into the spinal canal low in the back (lumbar area). Samples of CSF are collected. The samples are studied for color, blood cell counts, protein, glucose, and other substances. Some of the sample may be put into a container with a growth substance. This is called a culture. If any bacteria or fungi grow in the culture, an infection may be present. The pressure of the CSF also is measured during the procedure.  Source: WebMD.com

Spasticity: is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech and gait. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement.  Source: www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Spasticity

MRI: Magnetic resonance imaging ( is a test that uses powerful magnets, radio waves, and a computer to make detailed pictures inside your body.  Source: WebMD.com

Evoked Potential: An evoked potential test measures the time it takes for nerves to respond to stimulation. The size of the response is also measured. Nerves from different areas of the body may be tested.

Types of responses are:

  • Visual evoked response or potential (VER or VEP), which is when the eyes are stimulated by looking at a test pattern.
  • Auditory brain stem evoked response or potential (ABER or ABEP), which is when hearing is stimulated by listening to a test tone.
  • Somatosensory evoked response or potential (SSER or SSEP), which is when the nerves of the arms and legs are stimulated by an electrical pulse.

Each type of response is recorded from brain waves by using electrodes taped to the head. The visual evoked response (VER) is the most commonly used evoked potential test in the diagnosis of multiple sclerosis (MS).  Source: WebMD.com

Optic Neuritis: Optic neuritis is an inflammation that damages the optic nerve, a bundle of nerve fibers that transmits visual information from your eye to your brain. Pain and temporary vision loss in one eye are common symptoms of optic neuritis.

Optic neuritis is linked to multiple sclerosis (MS), a disease that causes inflammation and damage to nerves in your brain and spinal cord. Signs and symptoms of optic neuritis can be the first indication of multiple sclerosis, or they can occur later in the course of MS. Besides MS, optic neuritis can occur with other infections or immune diseases, such as lupus.  Source: mayoclinic.org

Myelin/Myelin Sheath: The insulating envelope of myelin that surrounds the core of a nerve fiber or axon and that facilitates the transmission of nerve impulses, formed from the cell membrane of the Schwann cell in the peripheral nervous system and from oligodendroglia cells. Also called medullary sheath.

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Source: WebMD

Sclerosis: The abnormal hardening of body tissue; excessive resistance to change

Central Nervous System (CNS): The complex of nerve tissues that controls the activities of the body. In vertebrates it comprises the brain and spinal cord.

DMDs: Disease-Modifying Drugs

  • IV steriods (solumedral): This medication is used to treat conditions such as arthritis, blood disorders, severe allergic reactions, certain cancers, eye conditions, skin/kidney/intestinal/lung diseases, and immune system disorders. Methylprednisolone may also be used with other medications in hormone disorders.  Source: WebMD.com
  • Avonex – AVONEX® (interferon beta-1a) is a once-a-week injectable treatment for relapsing multiple sclerosis (MS). It has been prescribed to over 455,000 people since its approval in 1996. AVONEX decreases the number of relapses, slows the progression of physical disability, and reduces brain lesions on magnetic resonance imaging (MRI).  Source: avonex.com
  • Betaseron – BETASERON® (interferon beta-1b) is a prescription medicine used to reduce the number of relapses in people with relapsing forms of multiple sclerosis (MS). This includes people who have had their first symptoms of multiple sclerosis and have an MRI consistent with multiple sclerosis. BETASERON will not cure MS but may decrease the number of flare-ups of the disease.
  • Copaxone – Glatiramer acetate is a synthetic protein that simulates myelin basic protein, a component of the myelin that insulates nerve fibers in the brain and spinal cord. This drug seems to block myelin-damaging T-cells through a mechanism that is not completely understood.
  • Glatiramer acetate is approved by the U.S. Food and Drug Administration (FDA) to reduce the frequency of relapses in patients with relapsing-remitting MS. It is also approved for use in individuals who have experienced a first clinical episode (clinically-isolated syndrome) and have MRI features that are consistent with multiple sclerosis.  Source: https://www.nationalmssociety.org/Treating-MS/Medications/Copaxone
  • Tysabri – TYSABRI® (natalizumab) is a prescription medicine used to treat adults with relapsing forms of multiple sclerosis (MS) to slow the worsening of symptoms common in people with MS and to decrease the number of flare-ups (relapses). TYSABRI increases the risk of progressive multifocal leukoencephalopathy (PML).  Source: tysabri.com
  • Lemtrada – LEMTRADA is a prescription medicine used to treat adults with relapsing forms of multiple sclerosis (MS). Because of its risks, LEMTRADA is generally used in people who have tried 2 or more MS medicines that have not worked well enough. It is not known if LEMTRADA is safe and effective for use in children under 17 years of age.  Because of its risks, LEMTRADA®is generally for relapsing MS patients who have tried 2 or more MS medicines that didn’t work well enough.  Source: lemtrada.com

Please visit www.nationalmssociety.org to research further about Multiple Sclerosis and the various disease-modifying drugs.

I hope this helps and serves as a reference for you as we move further in future podcasts.  On our next episode, we will begin to discuss DMDs, complementary (medical/holistic) therapies and how far the treatment of MS has come in the past twenty years.

Until next time!

Dawn & Daana

What is Multiple Sclerosis?

Since MS first appeared in the 1830s there have been thousands of medical literature written about the disease.  Over the years, numerous research and questions continue to loom about what it is all about or what makes Multiple Sclerosis tick.

You may have felt like you’ve walked into an inquisition hearing questions such as, what do you have again? Well, is it hereditary or does a person get it from the environment? The facts are that MS is an illness that many don’t understand because of its’ unpredictable nature and that it affects each individual diagnosed differently. Of course, there are quite a bit of similar occurrences and symptoms.  For example, numbness, tingling, and fatigue pretty much disturb all of us at some point.  Keep in mind that this certainly isn’t a one size fit all type of disease.

It has been reported that over 2 million people have MS.  According to The Multiple Sclerosis Foundation,” more than 400,000 people in the United States and about 2.5 million people around the world have MS. About 200 new cases are diagnosed each week in the United States. Rates of MS are higher farther from the equator.”

Multiple sclerosis statistics

Multiple sclerosis statistics

Source: https://www.healthline.com/health/multiple-sclerosis/facts-statistics-infographic

The National Multiple Sclerosis Society provides a brief detailed explanation below:

Multiple sclerosis (MS) involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. The exact antigen — or target that the immune cells are sensitized to attack — remains unknown, which is why MS is considered by many experts to be “immune-mediated” rather than “autoimmune.”

  • Within the CNS, the immune system attacks myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves.
  • The damaged myelin forms scar tissue (sclerosis), which gives the disease its name.
  • When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing a wide variety of symptoms.
  • The disease is thought to be triggered in a genetically susceptible individual by a combination of one or more environmental factors.
  • People with MS typically experience one of four disease courses, which can be mild, moderate or severe.

Source: www.nationalmssociety.org

As you prepare to tune in to our first episode January 19th, you will hear and learn more about this information along with the experiences of two women that have been living with MS for almost two decades.

Please feel free to leave your comments and questions and we will be sure to address them in the podcast.  If we do not answer you while on air, send us an email, Tweet, message us on Facebook or Instagram.  We are just a few clicks away!

Have a wonderful day!

Dawn and Daana

 

Here We Are

Thanks for stopping by our page. We welcome your comments and hope to provide you with informative and intriguing information about Multiple Sclerosis.

We are Daana Townsend and Dawn Morgan, two young women that met years ago, then quickly became friends. Our friendship flourished as we began to discuss living life with MS. Something continuously gnawed at us when we finally said, “let’s collaborate and share with the masses our knowledge.” It was important for us to begin discussing things from our perspective as well as experiences. Yes, we were both diagnosed with this monster of a disease. Daana, at age 23 (2003) and Dawn at age 25 (2000). Neither one of us chose to sit back and allow it to command the narrative of our life. Over the years we have taken the horns and now we are in control.

Please join us for our Myelin and Melanin podcast each week. Each episode will surely feed your mind and some may even touch your souls.

This is an exciting time for us and those with an unpredictable autoimmune illness like MS. We will have guest speakers from top medical professionals along with a variety of MS “experts.”

Happy listening! Glad to make your acquaintance!

Dawn & Daana
Myelin and Melanin