March '24 — Multiple Sclerosis Awareness

[Polegnyn Nemeara]

March is considered Multiple Sclerosis Awareness month here in the United Sates. Below is an overview of what it is and how this autoimmune disease can affect the body. Later this month, we'll discuss unique challenges faced by people-of-color and those undergoing gender-affirming hormone therapy. Support for anyone with Multiple Sclerosis is critical. Because of this, first-hand account from our own community will also be provided in hopes that it will help someone you know.

What is Multiple Sclerosis?

Multiple Sclerosis (or "MS") is a neurological-focused autoimmune disease where the body attacks the myelin coating enveloping nerves in the body. Once the myelin is damaged, the exposed nerve can no longer function as nerves with healthy myelin would, leading to (but not limited to) numbness, tingling, balance, mobility issues, slurred speech, bladder issues, and cognitive and subsequently mental health issues. Diagnosed as early as 1380 AD, this disease's cause and definitive diagnosis has remained elusive and challenging for anyone seeking comfort, remission(s), and especially a cure.

Timeline of MS-related Discoveries

It's a safe assumption there were undocumented or undiagnosed cases of Multiple Sclerosis prior to 1380 when Lidwina of Schiedam (later to be known as "Saint Lidwina", the Catholic patron saint of chronic pain.*) fell and broke her rib while ice skating. Her symptoms beginning after her fall were similar to that of MS despite counter arguments by modern day neurologists, specifically Dr. Thomas John Murray. Regardless, if she actually had MS or not, it wouldn't be until roughly 1794 for Augustus d’Este, a relative of the British royal family, to receive the first definitive diagnosis of Multiple Sclerosis. Since then, there have been numerous studies, lectures, and treatments focused on MS in hopes for a better quality of life if not outright cure. Sources: https://mymsaa.org/publications/motivator/summer-fall12/cover-story/timeline; linked names point to their respective Wikipedia entries

* Please opt in to the Spirituality & Religion forum via your usergroup admin if anyone would like discuss her canonization further.

Types of MS

As evidenced by Lidwina of Schiedam and Augustus d'Este's diagnosis, Multiple Sclerosis does not follow a "one-size fits all" model. Not only does its symptoms overlap with many different conditions, but there are also various types and severities of MS once an official diagnosis has been issued.

1. Clinically Isolated Syndrome (CIS) — Though still not technically considered MS, this stage includes hallmark symptoms that may or may not develop into Multiple Sclerosis. Anyone experiencing these symptoms (not listing them here because there are many and I don't want to concern anyone...) for 24 hours or more should consult their doctor. Read more about Clinically Isolated Syndrome HERE.
2. Relapsing-Remitting (RRMS) — This is the most common course Multiple Sclerosis takes according to the National Multiple Sclerosis Society. This particular type of MS is characterized by attacks or relapse of symptoms. During a new attack, the progression of disability remains stable instead of accumulating on top of previous hindrances caused by symptoms of Multiple Sclerosis. Read more about Relapsing-Remitting Multiple Sclerosis HERE.
   
   
3. Secondary Progressive MS (SPMS) — This type of MS follows the initial pattern of Relapsing-Remitting MS but also includes intermittent worsening and/or relapses of symptoms as time goes on. Read more about Secondary Progressive Multiple Sclerosis HERE.
   
   
4. Primary Progressive MS (PPMS) — This type of Multiple Sclerosis is essentialy a gradual and continual worsening of symptoms and disability. No relapses, attacks, or remissions. As seen in the graphic, plateauing symptoms are possible but the body continues to damage itself despite a resulting disability not necessarily showing until enough damage makes it apparent MS is continuing to worsen. Read more about Primary Progressive Multiple Sclerosis HERE.
   
   

Various Treatments and Therapies

Various treatments and therapies have been developed since the late 1800s. From lumbar punctures to modern medicines, treatments are continually evolving to meet the progression of research into how Multiple Sclerosis presents itself and can be treated. As of 2012, there are nineteen modern treatment options for those with Multiple Sclerosis and its symptoms to discuss with their doctor.

As with every disease, there are also alternative methods to treat Multiple Sclerosis. Bee Venom Therapy (aka "Bee Sting Theraphy") is a somewhat controversial alternative treatment method using bee venom. It is thought bee stings have an anti-inflammatory affect on the nervous system which counertacts the body's attacks. However, studies are limited and an unrelated allergy to bee stings has its own catastrophic results. ( Source: https://www.sciencedirect.com/topics/nursing-and-health-professions/apitherapy )

 

[Polegnyn Nemeara]

Multiple Sclerosis is a difficult disease to diagnose on its own. Mix in non-inclusive challenges for people-of-color and transgender people looking for adequate and trustworthy medical care and the complications grow exponentially.

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Is a particular racial demographic more predisposed than others? (researched and written by @Idine Espanyas; shared with permission):
MS used to be considered a disease that affected mostly people of European descent. Recent research, however, has flipped this outdated notion on its head and shown experts that more Black people have MS than previously believed.

MS can affect Black people in different ways- through greater disability and a faster disease progression. Due to the under representation of Black people in research studies, scientists don’t definitively know why these disparities exist. Current inequities in the (U.S.) healthcare system could be to blame. There are ongoing studies and clinical trials focused on these disparities, as well as the reasons why Black people may respond differently than white people to certain treatments.

MS impacts the Latinx community differently as well. Compared to other racial groups with the disease, Latinx people are diagnosed at a younger age and are likely to have more severe MS, with an earlier onset of debilitating symptoms such as vision and mobility problems.

Unfortunately, due to institutional and individual barriers, people of color are less likely to participate in MS research trials in the United States. Therefore, when new therapies are approved, information about these new therapies is not shared with these marginalized communities, which expands inequities in MS treatments.

For more information about the impacts of MS on communities of color, and to hear personal stories from those living with MS, follow this link: https://www.nationalmssociety.org/What-is-MS/Who-Gets-MS/Hispanic-Latino-Resources

What about people on hormone-therapies?
Transgender folx on gender-affirming hormone therapies may also find their regimens altered because of how MS reacts toward varying levels of testosterone and estrogen present in the body. Studies show people with more testosterone in their body seem to be less likely to develop this disease. Increased cases of Multiple Sclerosis in males seem to correlate with the loss of testosterone later in life. Women (who have more estrogen in their bodies) seem to be at a higher risk of developing it in general.

Even pregnancy seems to affect MS. Possibly due to immune changes during pregnancy, remissions have been seen during this time only to relapse once the pregnancy ends.

How increased testosterone and estrogen affects Multiple Sclerosis still has yet to be studied comprehensively.

Sources: https://www.healthline.com/health/multiple-sclerosis/ms-and-transgender?utm_source=ReadNext#disease-modifying-therapy, https://my.clevelandclinic.org/departments/neurological/depts/multiple-sclerosis/ms-approaches/care-of-the-transgendered-individual

Important insight from our own @Laithean Cor'dazar (shared with permission):

I am on Ocrevus, it is a DMT known as B-cell therapy. Broken down into it's most basic understanding, the medication attaches itself to the B-cells in my immune system and sort of locks them in place. It makes it so that they are not able to replicate, travel, or attack. I have an infusion of the medication every 6 months (it takes 5 hours and is super boring). It was originally thought that it would be a beneficial medication for cancer patients, but it didn't work in the way they expected. However, it did seem to have a great benefit for MS patients. Thus, after all the hullabaloo and research required it was approved as an MS medication option by the FDA. Why didn't it work for the cancer patients? They found that the cancer was actually able to spread faster and patients became sicker if given B-cell therapy. I had to undergo several tests to ensure that my body did not contain any form of cancer cells before I was cleared to receive B-cell therapy, and I still undergo testing every 6 months before I can get each infusion.

What does this have to do with gender-affirming hormone therapy? There is an increased risk of developing certain cancers, generally those pertaining to the reproductive organs (ovarian cancer, breast cancer, prostate cancer, testicular cancer, etc.), when using hormone therapies. This is true for both male and female hormones, so it can be detrimental regardless of which hormone therapy a person is using. I am not a doctor, and I am not saying that being on an MS medication means you cannot also be on hormone therapy, I am just telling you what I was told as an MS patient who wanted hormone therapy for perimenopause that it had the potential to be a really terrible disaster. The risk for cancer in hormone therapy is small, but when you have a medication that stays in the body for 6 months and no way to remove it having cancer cells show up and able to replicate and spread could really be devastating. I do not know if this is only in regards to B-cell therapy, or if it is similar in other MS DMTs. I believe this is a super important thing for those undergoing gender-affirming hormone therapy and who have MS need to know and understand so they can make their best choices in care. Communication between patients and doctors is vital, and if a patient has a doctor that is not willing to work with them or listen to them then it is in the patients best interest to try to find a different doctor.

 

[Idine Espanyas]

Thank you for sharing your personal experience, @Laithean Cor'dazar.

 

[Arinna Katal]

Seconded: thanks so much, @Laithean Cor'dazar!

 

[Morrighan Daghdera]

Thank you, Nem and Laithean. This is a horrible disease without a single test to conclusively confirm a diagnosis. I have not been diagnosed, but I have been extensively tested and still have an annual MRI to verify stability of the lesions already found. Thank you for bringing attention to this unpredictable disease.

 

[Alyria Ess]

Thank you both! While not recognized as a genetic disease, the following in my family have had the diagnosis on my mother's maternal side:

Great grandmother (and her brother, who passed from it in his 20s.)
Grandmother
Great aunt
Two of my mother's first cousins (women)
Aunt
Cousin (woman)

I have a spinal tap scheduled due to prevalent symptoms, but luckily no lesions have been found in my last MRI.

It's a...weird...disease. The theories on it's causes are inconclusive, the symptoms vary widely by person. It's weird.

 

[Idine Espanyas]

Thank you, Nem and Laithean. This is a horrible disease without a single test to conclusively confirm a diagnosis. I have not been diagnosed, but I have been extensively tested and still have an annual MRI to verify stability of the lesions already found. Thank you for bringing attention to this unpredictable disease.

That sounds incredibly frustrating. I hope the legions remain stable.

This topic has inspired me to look into Bike MS. I will register today probably. There is one of the largest events near where I live, the City to Shore ride. I also have a family member with the disease and a friend at work with this disease.

 

[Laithean Cor'dazar]

Thank you both! While not recognized as a genetic disease, the following in my family have had the diagnosis on my mother's maternal side:

Great grandmother (and her brother, who passed from it in his 20s.)
Grandmother
Great aunt
Two of my mother's first cousins (women)
Aunt
Cousin (woman)

I have a spinal tap scheduled due to prevalent symptoms, but luckily no lesions have been found in my last MRI.

It's a...weird...disease. The theories on it's causes are inconclusive, the symptoms vary widely by person. It's weird.

This is fascinating. I am the only member of my family going back generations to have ever shown signs and been diagnosed with the disease.
I pray that your symptoms resolve and that you can continue life with no lesions. I agree that it is a weird disease, and it unfortunately makes it extremely difficult to diagnose, treat, and as of yet... cure.

To everyone, thank you for taking the time to read all the information that Nem and the team has put together. They have done an amazing job gathering research and facts to help everyone learn and raise awareness about MS.

 

[Raevyn Tsornin]

Thank you for the info and those who are sharing their stories.

 

[Alexr al'Petros]

@Laithean Cor'dazar providing more invaluable insight into how to directly support someone with Multiple Sclerosis: (posted with permission)

If you do not have contact with someone directly but wish to support people with MS donating to one of the charities we've already discussed, or actively participating on a team or creating a team for Walk/Bike MS is the easiest and best way to be supportive.

The following are some of the major symptoms and disabilities of MS. Knowing these overarching symptoms can help you understand how to be a better advocate and supporter of people with MS.

Fatigue. The number one complaint of MS patients is fatigue. This is an exhaustion that doesn't go away and doesn't get better with stimulants like caffeine. Fatigue feels like someone dropped a wall on you and you can't really function until it gets lifted off again. Fatigue is usually chronic. It can last anywhere from 1 hour to multiple days, and it usually happens several times a week. It makes day-to-day living very difficult and is often the reason people have to leave their jobs.

Brain Fog. Brain fog is the cognitive decline in an MS patient. It is not being stressed and it is not being overworked. It is the deterioration of cells in the brain leading to the inability of the brain to process correctly. This is the same deterioration that is seen in dementia patients. It is a slow, steady decline in the ability to think, remember, and process information.

Nerve damage. Every exacerbation leaves behind a little bit of permanent damage. An exacerbation can occur multiple times on the same nerve. Eventually that nerve can become so damaged that it can no longer function. Many times, the nerves to the legs are attacked and patients will see a decline over the course of several years. It starts with unsteadiness, progressing to needing an assistive device like a cane or walker, and if the nerve gets damaged enough the leg(s) will stop functioning to the point of needing a wheelchair. This sort of progressive nerve damage can happen to any nerve in the brain, but MS has favorites. The legs, eyes, and throat seem to be preferred by the disease.

Nerve pain. MS is not a disease known for pain. It is more associated with numbness and tingling as well as loss of motor function, but there is a lot of hidden pain that goes with it. Spasticity is the cramping of muscles from nerve damage that is extremely painful with little to no relief. Trigger points are sources of pain as well as headaches, eye pain, and generalized pain due to inflammation and swelling in the body.

When someone says that a person with MS is fighting a battle they are not exaggerating. The body is, at a cellular level, fighting a war with itself and science has not yet figured out why. Until there is a better understating of how and why the body is triggered to fight, and how to make it stop, here are the things my husband (my biggest supporter) and I have come up with that anyone can do to help.

Walking pace. People with MS tend to have a lessened sense of balance, and they will often serpentine as they walk. It can be very difficult to get the muscles to trigger in a normal way and takes a lot more effort to walk at a steady pace. Being aware of how fast you are walking and slowing down to lessen the amount of energy needed by the person with MS can be extremely helpful. It is also very helpful when someone offers an arm/hand to hold on to. Pushing a cart/trolley can work similarly to having a walker and helps the person with MS feel more stable and walk straighter as well.

Allow them to work, but also help them. MS can take away a person’s independence and self-worth. As a supporter one way you can help is by allowing the person with MS to do the things they can, while still being present for when something is too hard. I have two examples of this:

1. I am perfectly capable of getting groceries. However, it takes a lot of energy and by the time I am back home I am exhausted. Having help getting the groceries from the car to the house and put away where they go allows my body to rest again and is an excellent way to be supportive and helpful without being dismissive.
2. Making dinner is very difficult for me. I am not strong, and lifting things in and out of the oven as well as on and off the stove can be a struggle. Having support in the kitchen can be wonderful, but for the supporter it is a difficult balance of when to help and when not to help, (don't take over the project, but be there to help when needed). The more you practice being supportive in this manner the easier it becomes.

Listening for the important complaining. My Husband brought this one up and it is something he states is a fine line between knowing when to listen intently, and when to listen with only one ear. People with MS live in a world of struggle most of the time, and the unfortunate side effect is that it makes us Debbie-downers. Sometimes we complain because life just feels unfair, and we are grumbling about it or what sounds like complaining is just us talking about our day (it was filled with pain and fatigue, and it feels gross). This sort of generalized complaining is the sort that isn't very serious, and he just tunes it out. He said that sometimes though my complaining takes on a stronger energy. This is when I am in a lot of pain, I am overwhelmed and causing myself too much stress, or when I need to see a doctor because I am having a major exacerbation. These are important times for him to really listen to what I am complaining about. With MS being a daily struggle, I often do not recognize when I switch from generalized grumbling to important complaining. Having a supporter who listens and can bring attention to when this switch occurs can be very helpful.

Allow time to rest. Stress is the number one trigger for worsening symptoms of MS. When a person with MS is pushing themselves too hard, they will almost always cause a flare. This can be a worsening of fatigue and brain fog, or a full-blown exacerbation and loss of motor function. Think about all the times you are overworked but you soldier through because the responsibilities need to be done. Now imagine that every time you did that you got flu for 2 weeks. In my experience most people in the world do not choose to allow themselves to rest. We push and push because that is what we are told makes us successful, good, quality people. It's quite wrong though, and for a person with MS it is damaging to the extreme. Being a supporter can sometimes mean being the bad guy for the greater good. Telling someone NO is never easy, but it can be one of the most important things you do for the person with MS who doesn't realize how far they are pushing themselves. On the flip side, when you want to do things or go places and the person with MS says they can't it is super important to allow them the grace they need to take that time to rest.

Thank you so very much once again, @Laithean Cor'dazar

Your insight in how to possibly support one's colleagues as well as some actionable resources will be shared next week.

 

[Idine Espanyas]

Thank you.

 

[Polegnyn Nemeara]

Our final post for March's focus on Multiple Sclerosis contains additional suggestions from @Laithean Cor'dazar regarding how to support coworkers with Multiple Sclerosis in a workplace environment. (Shared with permission)

Work area location. When I was a hair stylist, I had a major exacerbation that made me lose the feeling in my legs from the knees down. I could still stand and support myself, but walking took a lot of concentration and effort. To help with this I moved my workstation closer to the sensitization area, bathroom, and shampoo bowls. This allowed me to continue to work without having to walk as far. Switching a person's work location to allow easier access to bathrooms, break rooms, or other frequent stops is a great way to support a co-worker with MS.

Work accommodations. There are many accommodations that can be used to help someone with MS have an easier time at work. Things like a stool can be very helpful for taking pressure off leg muscles that are struggling, added lights can help someone who has optic nerve damage see better, a mirror to see behind them can help someone who gets dizzy when turning quickly, making sure the walkways are clear of trip hazards for those with slow reflexes and weak leg muscles, and something as simple as offering to bring a cup of coffee so they don't have to use the energy to get it themselves can be helpful for the person with MS.

Listen for the important complaining part 2. It is much easier to be an active listener for someone who has MS if you live with them. You begin to learn their grumbling style, and you can feel when their energy changes into something more important. However, it is possible to be supportive in a work environment also by listening for the important complaining over the course of a few days. A coworker with MS my start to complain about a smudge on their glasses. Maybe they have cleaned their glasses multiple times and still can't get the cloudiness to go away. This is a red flag for a flair in their eyes. An exacerbation flare usually starts small like smudged glasses, a foot that keeps falling asleep, or a twitch on the side of their mouth, and then over the course of a few days becomes something major like complete loss of color and/or vision in their eye, leg muscles that will not work and they cannot walk, and numbness that covers one whole side of their face. By listening for these important complaints you may be able to help bring attention to something they aren't really paying attention to. Just saying you've noticed they've mentioned it for a few days could be enought to help them get the care they need.

Supporting people with MS is as simple as being compassionate and thoughtful, to learn and know that they struggle in ways that the average person does not, and to be available to help when you can.

What else can I do if I don't know anyone with Multiple Sclerosis?!

Volunteering time or donating monetarily to an organization is always the most direct way to help fund research or support more than a single person with a disease. Multiple Sclerosis is no exception:

• The National Multiple Sclerosis Society (NMSS) — Perhaps the most well-known resource in the United States, the NMSS is simply focused on eradicating Multiple Sclerosis. In the meantime, this organization also seeks to provide patients a better quality of life. The NMSS also hosts the annual Walk MS or Bike MS which are probably both held in your most local largest city. People without MS can also participate in these events. Anyone, not just those diagnosed, can create a walking team, or can register to do the bike ride. Click HERE for more information.
• Multiple Sclerosis Foundation (aka "MS Focus" ) — A nationwide United States program providing "individuals with MS the help they need to maintain their health and well-being, to continue to be productive and independent, and to keep a roof over their heads and a safe environment in their home."
• Multiple Sclerosis Association of America — United States-based program providing direct support and services to individuals with MS and their families.
• MS Canada (formerly known and the MS Society of Canada) — MS Canada also envisions a world free of Multiple Sclerosis. They also "work with researchers, donors, partners, volunteers, and people living with MS to bring about positive change" through direct support, advocacy, and research.
• MS Society UK — Based in England, MS Society UK is working to find effective treatments, connecting and helping people with MS live well.
• MS-UK — "to empower [individuals with Multiple Sclerosis] to live healthier and happier lives by improving the understanding of MS and providing support where it is needed most."
• MS Society SA & NT — "a not-for-profit organisation dedicated to providing information, education, connection, care and support to people living with multiple sclerosis across South Australia and Northern Territory."
• MS Australia — a second Australian not-for-profit organisation. This one "dedicated to funding, coordinating, educating and advocating for MS research as part of the worldwide effort to solve MS."
• MS Plus — In addition to funding MS research, Australia's MS Plus also provides "emotional and practical support, from allied health, employment services and NDIS services to expert advice, wellbeing programs and peer support." They also sponsor an annual event, the MS Walk, Run, and Roll, which is the Australian equivalent to the United States-based NMSS' Walk/Bike MS events.