Medical – Twins Coast 2 Coast

“The smiles are real, but so is the struggle of living with MS. This year multiple sclerosis has kicked our asses.”

December 31, 2022January 29, 2023 twinscoast2coast

“The smiles are real, but so is the struggle of living with MS. This year multiple sclerosis has kicked our asses.” Tamara & Terry

We are MS advocates who share an honest and authentic life experience living with a chronic disease. We are thrilled to share the good, the bad and the funny of our MS journey for 2022. We first would 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 a story. Through our social media platforms, we have invited people into our lives. It is important to us to be transparent and real to our audience. We all have 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. At Twins Coast2Coast we have often thought of this journey as “The Good, The Bad and The Funny.”

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

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

We had several MS high profile events with which we were involved. These included Nancy Davis’ Race to Erase Center Without Walls Gala in Los Angeles. This funds a number of well recognized national research centers across the nation.

Terry attended the launch of Botanical Sciences with founder Dr. Robin Fowler and Montel Williams in Georgia. Botanical Sciences donated $5000 in honor of Twins Coast2Coast to the National MS Society Georgia Chapter.

This winter Twins Coast2Coast partnered with AXR winery of Napa California for a wine tasting fundraising event. One of the founders of the winery Kelly Trevethan was kind enough to attend and donate a percentage of proceeds which will help to support our nonprofit mission.

We were interviewed and featured in the MSAA Motivator Magazine summer/fall 2022 edition. This is a national publication. Topics discussed included aging with MS. This was a collaborative article which covered the wideranging issues of moving through life with MS.

Tamara and Terry were featured models for EQL Threads adaptive wear. EQL Threads provides sustainable fashion with hidden adaptive features that allow for comfort and mobility.

So “The Bad” included Terry contracting a severe case of shingles which stimulated trigeminal neuralgia. The pain was unbearable. Terry underwent gamma knife surgery in order to treat the neuralgia. This was emotionally draining and scary for Terry and the family.

Unfortunately, Tamara’s disease this year progressed to the point of needing a wheelchair. Both Tamara and Terry are now rolling ambassadors for the MS cause.

How about “The Funny?” A good sense of humor is a necessity when dealing with MS. Through it all we continue to find joy and meaning in life. MS also stands for Mighty Sisters!

Wishing everyone a Happy New Year!!

Hugs,

Tamara And Terry

Medical

Medical Studies

November 11, 2022November 25, 2022 twinscoast2coast

Tamara and Terry are honored to be asked by Harvard University to recruit patients that were on Lemtrada.

This study has been FDA approved and we are calling all patients that were on this medication to gather important information for the FDA

You may contact the email listed below if you were interested in this research study.

Best,

Tamara and Terry
Twins Coast To Coast

Harvard University is conducting a study on patients currently or have taken Alemtuzumab, sold under the brand name Lemtrada. This is an FDA approved study and participants will receive compensation.

The Cionic Neural Sleeve

The first bionic clothing for mobility impairment Sleeve

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

Tysabri

Terry was so fortunate that she was asked by Dr. William Stuart at the MS Center of Atlanta now called Atlanta Science Foundation.

The day finally came where I walked into the research department and was given my first IV infusion of Tysabri. During that time I had no idea if I was taking them to Tysabri or if I was in the placebo group with just water going through my veins. But all I could thought was my day has changed forever as this is the first clinical study I have ever been in, I definitely can make a difference for so many if I do well and I’m on the medication, and if I’m on the medication well my episodes and relapses improve.

I was on this study for several years. I did so well in my physical change was absent at any disability externally.

I stayed on Tysabri from February 2001 until September 2013 when my JC titres at 3.1 for several months and my MS Center was very concerned that I could develop PML, I was taken off Tysabri for a short time in February 2005 when they were a few cases I Patient developing PML with not very good outcomes. They study more and decided to put the medicine back on the market and that it was safe. At that time, I went back on Tysabri Happily.

In February 2005, two biotechnology companies, Biogen Idec and Elan, voluntarily withdrew a promising new drug for treatment for relapsing/remitting multiple sclerosis (MS) and Crohn’s disease called Tysabri (natalizumab). This drug was taken off the market after the discovery of two people with MS who developed PML after taking Tysabri.

Multiple Sclerosis and Cytoxan Therapy
Written by WebMD Editorial Contributors

Medically Reviewed by Christopher Melinosky, MD on November 22, 2021

Cytoxan is a therapy that may be given to people with multiple sclerosis. It works by suppressing the immune system. It’s given to people with MS because the disease is thought to be the result of an abnormally active and misdirected, immune system. Cytoxan (the generic is cyclophosphamide) can keep your white blood cells from attacking your central nervous system, thereby slowing MS disease activity.

The medication is taken in pill form or can be administered directly into a vein by way of an intravenous (IV) drip. Unfortunately, Cytoxan can produce serious side effects. Your neurologist will discuss the potential benefits and risks with you and your family. If you have any concerns or questions, discuss them with your healthcare team.

Terry’s medicine through the years…

Steroids: Medrol

Main Results
Description
Steroid
It can treat inflammation, severe allergies, flares of chronic illnesses, and many other medical problems. It can also decrease some symptoms of cancer.

Brands: Depo-Medrol, Solu-Medrol, Medrol, Ready Sharp Methylprednisolone, P-Care D80, and P-Care D40
Availability: Prescription needed
Pregnancy: Consult a doctor
Alcohol: No known interactions with light drinking
Drug class: Glucocorticoid

Gilenya

What Is Gilenya and how is it used?
Gilenya is a prescription medicine used to treat the symptoms of Multiple Sclerosis. Gilenya may be used alone or with other medications.
Gilenya belongs to a class of drugs called Immunomodulators; Multiple Sclerosis Treatments; Sphingosine 1-Phosphate Receptor Modulators.

Tecfidera

Description
Tecfidera is an oral therapy contained in capsules taken two times per day. Tecfidera, formerly known as BG-12, is dimethyl fumarate, a formulation that was developed specifically for use by people with multiple sclerosis. A chemically related compound, called Fumaderm (dimethyl fumarate and fumaric acid esters), has been used at higher doses for decades in Germany to treat acute flare-ups of psoriasis. Although its exact mechanism of action is not known, Tecfidera is thought to modulate the immune response to be less inflammatory and may have antioxidant properties that could be protective against damage to the brain and spinal cord.

“Tecfidera is approved by the FDA for the treatment of relapsing forms of multiple sclerosis to include clinically isolated syndrome, relapsing-remitting disease and active secondary progressive disease in adults” National MS Society

Methotrexate

Methotrexate, a toxic antimetabolite that limits cellular reproduction by acting as an antagonist to folic acid, has been used to control autoimmune disease with different results. The aim of this study was to evaluate the effectiveness of low dose Methotrexate in the relapsing-remitting multiple sclerosis (RRMS).

Rituxian

Immunosuppressant that is used as a disease modifying therapy to treat multiple sclerosis.

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

June 16, 2022 twinscoast2coast

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.