Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
Available on Amazon and www.marynickum.com

Friday, April 26, 2024

Advances in Treatment of Multiple Sclerosis

 

Drugs May Help Rebuild Myelin

Two drugs, metformin (Fortamet, Glucophage, Glumetza, Riomet) and clemastine (Dayhist, Tavist), may help rebuild your myelin. Usually, metformin treats diabetes and clemastine helps with hay fever. Researchers found metformin can help myelin-making cells repair it better. Experts found clemastine helped with the speed of messages from your eye to your brain. Animal studies showed metformin can improve the effect of clemastine.

More research is needed about the effects on humans.

Pioglitazone May Prevent Myelin Damage

Experts are doing clinical trials with pioglitazone (Actos), a diabetes medication, in people with progressive MS. They want to see whether the drug can target immune system attacks on myelin. Pioglitazone may be a useful therapy to protect nerve fibers from more damage and even repair damage to myelin.

BTK Blockers May Lessen Nerve Damage

Bruton’s tyrosine kinase (BTK) plays a role in the survival of B cells, white blood cells that make antibodies. Some B cells are linked to MS relapses and progression because they attack myelin. BTK inhibitors (BTKis) target B cells that can do damage while leaving useful B cells alone. BTKis were first used to treat cancer. Now scientists are studying some BTKis – evobrutinib, fenebrutinib, orelabrutinib, and tolebrutinib – in clinical trials to find out how effective they are against MS.

ATA188 Targets EBV, May Help MS 

This therapy targets Epstein-Barr virus (EBV), which is believed to play a role in how likely you are to get MS. ATA188 involves T cells (white blood cells in the immune system) that target and kill cells infected with EBV. Experts are studying the proper dosages, safety, and success of this intravenous (IV) infusion and how it can help treat progressive MS. 

Ibudilast Can Slow Brain Shrinkage

Ibudilast (MN-166) is an anti-inflammatory drug that lowers the action of an enzyme called phosphodiesterase. Blocking the enzyme can lessen inflammation and promote nerve growth. Ibudilast can’t stop new MS lesions. But it can slow brain shrinkage and stop some immune system actions that can lead to nerve damage. Researchers also found that ibudilast appears to help treat slowly evolving lesions (SELs) in people with progressive MS.

Stem Cell Therapy for Harmful Cells

This treatment uses or targets stem cells, which are cells that can turn into different types of specific cells all over your body. They can help your body repair itself. One form of stem cell therapy is hematopoietic stem cell transplantation (aHSCT). Experts use this to reset your immune system through chemotherapy. If you have MS, this will get rid of harmful cells that cause damage and swap them with healthy immune cells. 

DMTs That Can Change the Course of MS

Disease-modifying therapies (DMTs) can help control your MS symptoms. The FDA has approved different types of medication to treat and manage MS:

  • Ocrelizumab (Ocrevus), ofatumumab (Kesimpta), and ublituximab-xiiy (Briumvi) target CD20, a protein on the surface of B cells. These B cells are white blood cells that have been shown to play a role in MS.
  • Diroximel fumarate (Vumerity) lessens inflammation and stops nerve damage that may cause MS symptoms.
  • Fingolimod (Gilenya) reduces the MS relapse rate in adults and children. It’s the first FDA-approved MS drug for kids.

Other DMTs That Can Change the Course of MS

  • Ozanimod (Zeposia) can help with clinically isolated syndrome, relapsing-remitting MS, and active secondary progressive MS.
  • Ponesimod (Ponvory) can lower the chance of MS symptoms coming back by more than 30%.
  • Cladribine (Mavenclad) and siponimod (Mayzent) are other treatments that can lower your relapse rate if you have MS. They stop certain cells of the immune system from causing nerve damage.

Cladribine for Other Forms of MS

As mentioned, this drug already helps people with relapsing-remitting MS. The first trial of its kind is studying whether cladribine can help more advanced progressive MS. Experts are hopeful because it’s one of the few DMTs that can get inside your brain and spinal cord. That's why it’s so helpful for relapsing MS.

Cholesterol Drugs May Help With MS

Simvastatin (Flolipid, Zocor) is a statin doctors prescribe to treat high cholesterol. It may also help slow down secondary progressive MS. Some studies show that higher cholesterol levels are linked to worsened MS. Because of this, experts thought simvastatin might slow down MS progression if it lowers your cholesterol. But a more recent study found that the drug directly slows down the progression of MS, even if it doesn’t help your cholesterol levels.

https://www.webmd.com/multiple-sclerosis/ss/cm/slideshow-multiple-sclerosis-advances-treatment?ecd=wnl_mls_042624&ctr=wnl-mls-042624_lead_cta&mb=q80%2f%40kIeuyYKtyaYzOxdbc6RVoMqf%400VkpmvpK5yEEQ%3d

 

Friday, April 12, 2024

Strange MS Symptoms

 Here are some discussions of strange and unique MS symptoms:

https://multiplesclerosis.net/living-with-ms/strange-symptoms-experience

https://msfocus.org/Magazine/Magazine-Items/Posted/Understanding-the-Rarer-Symptoms-of-Multiple-Scler

https://www.mymsteam.com/resources/unusual-sensations-and-ms-causes-and-when-to-worry

https://legacyneuro.com/toothache-trigeminal-neuralgia/

https://www.upstate.edu/whatsup/2013/0625-that-painful-toothache-may-be-trigeminal-neuralgia-heres-how-to-treat-it.php

https://www.webmd.com/multiple-sclerosis/ss/slideshow-unusual-symptoms-ms

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9313873/

https://mail.google.com/mail/u/0/#inbox/FMfcgzGxSlMCkJgTGZtBswnjjpDDZcQb

Sunday, February 18, 2024

Disparities in Pregnancy Experiences Found Among Black, Hispanic/Latinx and White Women with MS

 Researchers examined medical records of women with MS in the U.S. and their pregnancy outcomes, comparing those of Black, Hispanic/Latinx, and white people. They reported that those identifying as Black or Hispanic/Latinx tended to enter pregnancy with higher levels of MS disability and often with fewer health care resources. There were also differences in types of delivery, birthweights, and socioeconomic factors.
 
Why Does This Matter? This study adds to the growing awareness of health disparities and can inform ongoing efforts to improve care for everyone living with MS.
 
Background: MS is highly individualized, and disease characteristics and a treatment plan are significant considerations in family planning and pregnancies. These investigators wanted to understand how healthcare inequities may impact the pregnancy outcomes of Black and Hispanic/Latinex women. Previous studies suggest that prenatal care is especially important for Black and Hispanic/Latinx women because they tend to have higher risks of high blood pressure, diabetes and other disorders that may complicate their pregnancies.
 
Study Details: To better understand differences among women with MS and their pregnancy experiences, Dr. Riley Bove (University of California, San Francisco - UCSF), a National MS Society Harry Weaver Scholar, and collaborators examined medical records from 9 MS centers in the U.S. They looked for pregnancy and delivery information of women with MS or CIS (a single neurological event that indicates early MS) between 2010 and 2021. They analyzed 294 pregnancies that resulted in live births.
 
Results: Some differences they found included:

  • Black and Hispanic/Latinx women tended to be younger than white women when they became pregnant, and they had higher levels of MS disability when they became pregnant.
  • More white women had private insurance, and more received an ultrasound exam at 14 weeks of pregnancy.
  • Black women had the highest rates of emergency cesarean deliveries, and Hispanic/Latinx women had the fewest delivery complications. Babies’ birth weights of both tended to be lower than those of white women.
 
Comment: The authors suggest that some reasons for the differences may include availability of transportation, types of insurance, social support, and access to prenatal care. Studies like these can inform ongoing efforts to improve care for everyone living with MS.

Wednesday, February 7, 2024

Why Do Women Have More Autoimmune Diseases? Study Points to X Chromosome

 

Women are much more likely than men to have their immune system turn against them, resulting in an array of so-called autoimmune diseases, like lupus and multiple sclerosis. A study published on Thursday offers an explanation rooted in the X chromosome.

The research, published in the journal Cell, suggests that a special set of molecules that act on the extra X chromosome carried by women can sometimes confuse the immune system.

Independent experts said that the molecules are unlikely to be the sole reason autoimmune disease skews female. But if the results hold up in further experiments, it might be possible to base new treatments on these molecules, rather than on the current drugs that blunt the entire immune system.

“Maybe that’s a better strategy,” said Dr. Howard Chang, a geneticist and dermatologist at Stanford who led the new study.

Male and female embryos carry 22 identical pairs of chromosomes. The 23rd pair is different: Females carry two Xs, while males carry an X and a Y, which lead to the development of male sex organs.

Each chromosome holds genes that, when “switched on,” produce proteins to do work inside of cells. You might expect that women, with two copies of X, would make twice as many X proteins as men do. Instead, they produce about the same level. That’s because one of the two X chromosomes is silenced.

A molecule called Xist clings to the second X chromosome “like Velcro,” Dr. Chang said. As hundreds of Xist molecules wrap themselves around the X chromosome, they completely shut it down.

Keeping one X silent is crucial to women’s health. If a gene on the second X chromosome escapes Xist’s control, it will result in an excess supply of proteins, some of which could be toxic.

In 2015, it occurred to Dr. Chang that the silencing itself might also have a downside. His epiphany occurred while he was preparing to take his medical board exams to renew his license as a dermatologist.

As part of his studies, Dr. Chang had to brush up on autoimmune diseases, memorizing the names of human proteins that can be targeted by a misdirected immune system. When he looked at the list, he was surprised to see some familiar names.

When Dr. Chang isn’t working as a dermatologist, he researches the X chromosome in his lab. He noticed that many of the proteins involved in autoimmune diseases also helped Xist silence the X chromosome.

Maybe, Dr. Chang thought, that was no coincidence.

The new study emerged from years of research testing his hunch that Xist molecules could cause autoimmune disease. He and his colleagues studied a strain of mice in which the females are at high risk of the autoimmune disease lupus, while the males never develop severe cases.

The researchers genetically engineered the male mice so that they, like the females, produced Xist. “Once the male mice express Xist, they get much worse levels of immune disease,” Dr. Chang said.

The researchers also found that people with lupus or two other autoimmune disorders had high levels of antibodies to Xist-related proteins in their blood.

Sunday, February 4, 2024

Researchers Seeking Black Americans with MS to Participate in Genetics Studies

 Help Find Clues to the Cause and Treatment of MS
 
Researchers at the University of California MS Genetics Project are studying how MS affects Black Americans with MS. The university maintains a unique repository of DNA and other biological materials with the support of the National MS Society.

Why Does This Matter? New research shows that more Black people are diagnosed with MS than previously thought and that they may have a different disease course. Genes are known to play a role in determining who is susceptible to developing MS and may also influence the severity and course of the disease. Identifying the exact location of MS genes could help determine who is at risk for developing the disease and may provide clues to its cause, prevention, and better treatment.
Focusing on Black, Hispanic/Latinx, Northern European, and other ancestral groups, and searching for what is common and what is different in their DNA sequences may help identify the precise genetic variants that contribute to MS.

What is involved?  It is not necessary to travel to San Francisco to participate in this study. Once an individual has completed the initial online intake form and has agreed to participate, they are emailed the links to two additional online forms and sent a kit via express mail.

The kit includes a consent form, a health information privacy form, and a medical records release form. The kit also includes everything necessary for the blood draw, which can be taken to your local Quest Diagnostics Lab, where the blood can be drawn and then returned in a prepaid envelope to the UCSF MS Genetics Lab. There is no cost to the study participants. 

Individuals recently diagnosed with MS living in the San Francisco Bay Area are also eligible to participate in an MRI study to identify relationships between genetic profiles and tissue damage in the brain and spinal cord.

Please note: this study cannot enroll international participants at this time.

Contact: 
To participate or request additional information, please complete this brief intake survey.

OR you may contact the UCSF DNA directly:
Clinical Research Coordinator
UCSF Multiple Sclerosis Genetic Susceptibility Project
675 Nelson Rising Lane, Suite 235A, Box 3206
San Francisco, CA 94158
Email: msdb@ucsf.edu
Website: https://msgenetics.ucsf.edu/

Saturday, December 30, 2023

Promising Experimental Treatments for Multiple Sclerosis

 

What’s on the horizon for people with multiple sclerosis? Dedicated doctors, scientists, and volunteers are working today to answer that question and find tomorrow’s breakthroughs.

Several experimental treatments are being studied to figure out whether they’re safe and effective for people with different kinds of multiple sclerosis (MS) and at different points in their journey.

The main research goals are to find new ways to stop MS from getting worse or even to reverse nerve damage and the disability that can come with it. Eventually, the hope is to end MS forever.

That’s a tall order for sure, but progress is being made in laboratories and medical centers all around the world.

Resetting Your Immune System

When you have multiple sclerosis, your immune system attacks your central nervous system. So what if doctors could flush out your “bad” immune system and give you a new one? That’s the basic idea behind a type of bone marrow transplant called autologous hematopoietic stem cell transplant (AHSCT).

How does this work? Thrower explains it this way:

  • Immature stem cells made in your bone marrow are removed from your blood.
  • These cells are sort of cloned and many copies are made.
  • The bad immune system’s “hard drive” is wiped clean with high-dose chemotherapy.
  • The immune system is rebooted with the fresh stem cells that don’t attack your nervous system.

Since they’re your cells, they can’t be rejected. But it will take your body about a month to replace your immune system. That puts you at risk of potentially life-threatening infections, including COVID-19 and others.

The procedure is not new but not approved by the Food and Drug Administration. It could be soon, says Ben Thrower, MD, a neurologist and medical director of the Andrew C. Carlos MS Institute at Shepherd Center in Atlanta and senior medical advisor for the Multiple Sclerosis Foundation.

In fact, the National Institutes of Health is sponsoring a clinical trial comparing AHSCT against the most widely used and effective treatments for relapsing-remitting MS.

Even though AHSCT isn’t approved, experts know a lot about the best candidates for this ambitious therapy. It’s most successful in people with aggressive relapsing-remitting MS who are under age 50, according to Thrower.

This is the same procedure actress Selma Blair had in 2019, he adds. Her journey is the subject of a 2021 documentary called Introducing, Selma Blair.

Talk to your neurologist about whether you should try AHSCT. Many Americans go to other countries for this treatment.

Other New Stem Cell Approaches

Doctors are exploring other stem cell approaches. One stem cell transplant therapy being tried at Atlanta’s Shepherd Center is intended to treat all types of MS: relapsing-remitting, primary progressive, and secondary progressive. The procedure uses what’s called mesenchymal stem cells. It may be able to repair damage and reverse disability.

Mesenchymal cells are more mature than embryonic stem cells, which have a better ability to repair but are risky. “Once you put embryonic cells into the body, you lose control and you can’t take them out once they’re in. They can turn into cancerous cells or tissue you don’t want them to develop into,” Thrower says.

“Embryonic stem cells are like a genie in a bottle, you don’t know whether you’ll get a good genie or a bad genie,” he says.

Mesenchymal cells offer more control and are safer to use. The trial in Atlanta infuses these cells into volunteers through a vein. Unlike AHSCT, it doesn’t destroy the immune system.

But the jury is still out on this approach. It’s only in the first phase of research, so it’s years away from becoming an approved treatment.

Monday, December 25, 2023

Ways To Help Advance MS Research

 Researchers are committed to finding solutions for everyone affected by MS — the very people who hold the key to the answers. Without participants in research studies, MS research would come to a standstill.
 
People with MS, and sometimes family members, can help advance MS research by:

  • responding to surveys online
  • sharing their voices and ideas through NARCOMS and iConquerMSTM, organizations that amass volunteer-submitted information
  • volunteering for clinical trials and other studies
  • donating DNA from saliva and blood samples
  • arranging for brain or spinal cord tissue donation to a tissue bank; this type of donation is incredibly valuable and truly appreciated by all who are involved in moving toward a world free of MS.  Blood samples also can be donated for use in MS research studies.

Assess each opportunity and make an informed decision before agreeing to participate — understand the possible benefits and risks. See our Guide to Participating in Clinical Trials.

Everyone can get involved to support research investment, or advocate so that Congress provides funding for MS research and supports other efforts such as understanding incidence and prevalence

 

Participate in a Clinical Trial

Clinical trials help to determine if treatments and other interventions are safe and effective. Studies enrolling diverse populations are monitored to ensure that the rights and safety of all participants are protected. Without the participation of people with MS, it would be impossible to develop new and better solutions.

Learn More

Surveys and Other Research Studies

Conducted by investigators seeking to answer scientific or health policy questions about MS, or by pharmaceutical or medical device companies aiming to develop or improve products for people with MS.

Participate Now

Participate in Genetic Studies

By donating DNA from blood samples, you are helping research that could lead to ending MS forever. Learn more about genetic studies and how you can participate.

Give DNA

Donate to Tissue Banks

People living with MS may hold the key to finding a cure. Learn more about tissue banks and donating brain and spinal cord tissue for researchers studying MS.

Read More

COVID-19 Studies Recruiting People with MS

Explore opportunities for participation in research studies seeking to understand the impacts of COVID-19 and how the vaccine can affect people living with MS.

Learn More

Research Studies: Newly Diagnosed with MS

If you are new to MS, you have the chance to help advancements in MS research. Discover studies researching the earliest stages of MS looking for participants.

Learn More

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NARCOMS Patient Registry

Register as a willing MS research participant to facilitate multicenter studies. Initiated by the Consortium of MS Centers.

Visit NARCOMS

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iConquerMS™ Online Portal

Share information and ideas for research topics important to you. Each contribution and suggestion brings us closer to faster diagnoses and improved treatments.

Visit iConquerMS™