The End of My LEMTRADA Journey — The End of an Era

I fully acknowledge that the title of this post is overdramatic and extra. But that’s how I’ve been feeling.

Yesterday was my monthly LEMTRADA lab day. The phlebotomist comes to my house to collect them. It’s been the same woman for the past almost 5 years — since the beginning of my LEMTRADA journey. She’s been with me as I transitioned from a cane to a walker and finally to a wheelchair. She’s been with me through multiple hospital stays and two several months-long inpatient rehab stints (she came there to collect the labs). She’s been there through two moves — one from my parents’ to my new apartment, and from my apartment back to my parents’. She’s been with me as I had to stop driving. She’s been with me as I had to file (and get approved, thankfully) for SSDI.

Though she doesn’t know it, she’s represented an oddly comforting consistency over the past 5 years. Maybe it’s the Taurus in me — who knows. The LEMTRADA labs represent a benchmark of sorts. They are a timeline of my sad slow decline, post-LEMTRADA. Everything that happens in my life now is filtered through that lens.

LEMTRADA didn’t work for me. In fact, I had to begin another DMT (Ocrevus) after my final infusion in 2016 (in a perfect world, this shouldn’t have been necessary). That said, the labs are also a bitter reminder of how LEMTRADA failed me.

The drug “rules” require that for four years after our final infusion (mine was February 2016) we are monitored monthly to ensure that LEMTRADA isn’t fucking up our organs, system, etc. (any more so than it already viscerally has for me). I am grateful that my thyroid and kidneys have been spared from the drug’s grips over the past five years — a possibility I was warned about when I signed my life away prior to starting LEMTRADA in 2015. I caught a break, after all, I guess.

So, February 2020 is the end of my four year monitoring period. It’ll be the official end of my LEMTRADA journey. The end of an era. I feel oddly sad.

It’s weird.


Episode 8 — LEMTRADA Lessons

Listen to Episode 8  of Myelin & Melanin!

Join us as we share our LEMTRADA stories. We reflect on life before, during and after LEMTRADA. Would we do it again?

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on!

We also have a new YouTube channel. Search “Myelin and Melanin” on YouTube to find us — check us out and subscribe!

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.

Episode 3 — Treating the Whole Person –feat. Dr. Kevin Flythe, DO

Listen to Episode 3 of Myelin & Melanin! Are you familiar with the various types of complementary (alternative) medicine that benefit MS patients? We have a guest, Dr. Kevin Flythe, who is a doctor of chiropractic care in Atlanta Georgia, discussing the benefits of chiropractic care and various complements to DMDs.

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on.

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.

Busy Recording!

Busy recording our next episode on chiropractic care as holistic, complimentary MS therapy — with a special guest!

Tune in on Friday. Listen, stream and follow us on iTunes and SoundCloud (the link can be found here).

“The goal of chiropractic therapy is to restore normal function to joints and their supporting structure, especially the vertebral column and pelvis. Following a simple examination and — often — radiological evaluation, the chiropractic practitioner applies precise adjustment to the vertebral column to bring structures back into alignment. This realignment is supposed to eliminate the irritation to the nerves and restore normal function.” [ ]

Care for “the whole person” is key.

Love & Light.

[ 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:

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:

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

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:

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:

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:
  • 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:
  • 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:
  • 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:
  • 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:

Please visit 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