The Multiple Sclerosis Alliance of Virginia would like to thank MS Views and News for the decision to bring Dr. Aaron Boster to us virtually this coming Saturday. Although we were honored to have the program live in Southwest Virginia, it’s appreciated that Stuart Schlossman has put the safety of people living with MS first.
By now, many of you know that we (MS Views and News) needed to cancel (again) our MS educational program on August 7th in Roanoke. We were thinking what is best for you, Our #MS Peers.
Radford University Carilion is performing a study about activity levels and exercise performance through interviews with individuals diagnosed with MS in the Roanoke and surrounding areas.
If interested, please complete the short survey (linked below) regarding your current activity level. Completing the survey does
not require you to participate in the interview. Click this link: Radford PT Survey
Your brain is the most complex organ in your body. It performs a long list of functions critical for life.
This is possible because of electrical impulses that travel through nerve cells called neurons. Each neuron has a tail-like axon that carries those impulses to the next cell. Axons have a protective covering called myelin, which speeds up the signal transmission.
If you have multiple sclerosis (MS), your immune system mistakenly targets the myelin in your brain and spinal cord. This interferes with the transmission of nerve impulses and causes MS symptoms.
MS and the brain
Your brain is about 20 percent myelin. When MS interferes with the function of this myelin, it can disrupt the neuronal activity in your brain. As a result, more than 50 percent of people with MS experience some cognitive changes.
Sometimes cognitive changes are the first sign that you have MS, although these types of changes are more likely to occur later on, as the condition progresses. These changes can happen with any type of MS but are more common in progressive MS.
Some of these changes can affect:
- concentration and attention
- information processing
- prioritizing and planning
- verbal fluency
- visual spatial ability
According to one study, roughly 40 percent of those with MS will have only mild symptoms, but 5 to 10 percent will have moderate to severe symptoms. Those with progressive MS tend to experience more severe cognitive changes than those with relapsing-remitting MS.
During an MS flare, inflammation can trigger new cognitive challenges, or intensify the ones you already have. Sometimes these flare-related changes are permanent, but they can also resolve once the flare has passed and the inflammation has subsided.
Brain fog is a term used to describe how your brain doesn’t seem to work as well as it once did. It’s also sometimes referred to as “cog fog,” the shortened version of cognition fog.
When you experience brain fog, you might forget words, lose your keys, or miss an appointment. Your job performance or schoolwork may be affected, or you might be challenged by everyday tasks, like decision making.
Brain fog can be your first MS symptom, or it can appear after you have a diagnosis. Brain fog can interrupt your daily routine by causing you to become absentminded. Strategies to manage brain fog include:
- writing to-do lists
- using voice-to-text technology to keep notes
- using timers and alarms
- using a family calendar
- saving difficult tasks for when you’re most alert
- reducing background noise when you need to concentrate
- designating a specific area in the home for important items, like mail and keys
- avoiding multitasking
- taking frequent breaks to recharge
If you have an MS diagnosis and begin to notice cognitive changes, it’s important to talk with your doctor to assess the situation. Early screening and ongoing monitoring can help those with MS manage their symptoms. To continue to read this article in its entirety click the link for more: MS and Brain Fog
Whether it’s progressing quickly or slowly, the unpredictability of multiple sclerosis can really lead you to question yourself. Am I fatigued or am I just tired? Did I fall because I’m clumsy or because I experienced foot drop? Is this a new symptom? Oh no, is this another relapse? When you’ve grown accustomed to a disease impacting your body and life the way MS does, it’s easy to start second-guessing every little sensation you encounter. Some of the top questions that I get are along the lines of, “Do you think this is because of MS?” where they mention something that’s happened to them. Often, I tell them what I am writing about here: listen to your body.
Causes for Concern
With MS being so unpredictable, it’s very easy to panic if you’re not feeling right. Many people who have the disease, me included, are accustomed to being fine one minute and not the next. I used to even worry about going to bed sometimes, in fear that I might wake up with some sort of new issue or full on relapse.
Am I having a relapse?
That’s what happened to me through my first several exacerbations; I was fine prior to sleeping and then woke up with parts of my body no longer functioning properly. So, I understand the fear and concern that comes when you start to suddenly not feel so good. The fact that starting steroids at the first sign of a relapse can be crucial in lessening its duration only increases the anxiety and importance of properly figuring out if MS is the problem.
Know your triggers
When asked if a symptom or sensation is cause for concern, at first, I usually tell folks not to panic (remember, stress makes everything worse). I then tell them to think back: has it happened before? I also tell them to think about what has triggered symptoms in the past. When you experience a MS symptom or sensation, your body is talking to you. It takes some time and experience to understand what it’s saying though.
Understanding how your body reacts to things
For example, I’ve learned over the years, that if my vision starts to blur, it’s not the start of an exacerbation, it just means I’m too warm. If I start tripping or even falling, chances are I was very active the day before and I simply need some rest. The longer you live with this disease, the more you can put two and two together when it comes to how you feel.
Go with your gut
The longer you live with MS, the better you can understand your own body. You begin to realize that any number of activities, emotions, or even environmental changes can have a big impact on how you feel. After some time though, you’ll realize that when something is really wrong, you’ll just know. After many years, as weird as it might sound, when I’ve experienced a full-on exacerbation, I just knew it. I could feel it happening. I knew by the way I felt that it was different. I knew that I needed more than some rest. It was almost a gut feeling that told me, “This is different, this is serious, you need to talk to your neurologist NOW.”
Learning to listen to your body
So, while it’s important to step back and look objectively at what triggers your body has been exposed to recently, it’s also important to listen to that gut feeling you have. If you take a second to calm down and not panic, your body will tell you how concerned you should be, and many times, that gut feeling is how it does it.
Through experience, you’ll learn to listen to your body. You’ll realize that not every sensation or symptom you experience is cause for concern. You’ll also learn that your body will tell you when you really need to be concerned, you simply must be ready to listen to it.
Multiple sclerosis(MS) is defined as being an aggressive immune related disorder. What this basically means is that our immune system mistakenly labels a certain section of our body as a threat, which it attacks, similarly to how it would work to attack and eliminate viruses in the body. The problem with MS is that it leads the immune system to attack the organs as well as the protective layers (or myelin) of our nerve cells.
MS is described as unpredictable with an abundance of symptoms. However, there are several common symptoms of multiple sclerosis you should be aware of.
1. Weakness and fatigue
Statistics indicate that as many as 80% of all patients will experience extreme weakness and fatigue. This usually occurs if the condition has led to your immune system attacking the nerves around your spinal column. However, it’s important to note that weakness usually starts in your feet before it spreads to the rest of your body.
2. Spasms and pain
Another common symptom patients experience is involuntary muscle spasms as well as chronic pain. In fact, a study that was conducted by the National MS Society demonstrated that as much as 50% of all patients will experience muscle spasms or chronic pain. This occurs as a result of your immune system attacking the nerve cells in the body that’s responsible for transmitting information from the brain as to how a particular part of the body should move.
3. Vision loss
As the immune system mistakenly attacks various sections of our body, it can lead to inflammation within our optic nerves. This build up of inflammation essentially interferes with our optics nerve’s ability to transmit information which is crucial for our central vision. This leads to double vision, blurry vision and a gradual loss of vision.
4. Numbness and tingling
In some instances, the condition may attack the body’s message center, which consists of billions of nerves in your spinal cord and brain. By interfacing with the body’s messaging center, it essentially causes it to send mixed signals throughout the body such as a tingling sensation. In some instances, this disruption will cause signals to stop, which leads to numbness.
5. Emotional issues
A vast majority of patients with this disorder report that they experience major depression. Because of the various processes of the body that this condition targets, it can also lead to severe depression as well as mood swings and irritability.
6. Balance problems
Patients with multiple sclerosis, commonly report symptoms of dizziness and lightheadedness. This is especially true when they try to stand up after sitting for an extended amount of time. This is because the condition interferes with your body’s ability to coordinate and balance itself, This eventually leads to a severe loss of mobility.
7. Bowel and bladder dysfunction
Statistics indicate that as much as 79% of all patients with multiple sclerosis will experience bowel and urinary related problems, such as:
- Intense urge to urinate
- Inability to go long periods without urinating
- Inability to control bowel movements
Multiple sclerosis is a progressive inflammatory disease that affects the central nervous system. The condition does not have a cure yet, but researchers say that a healthy, balanced diet rich in anti-inflammatory foods can help prevent frequent flare-ups and may even slow disease progression. Here are five beneficial foods for multiple sclerosis patients.
- Fatty fish
Fatty fish may be one of the best foods to include in the diet for multiple sclerosis patients as they are packed with omega-3 fatty acids. These healthy fats help fight and reduce inflammation, and they are also good for balancing out omega-6 fatty acids, which are generally higher in the typical American diet. Salmon, mackerel, sardines, tuna, herring, and trout are among the best sources of omega-3 fats.
- Vitamin D-rich foods
Studies indicate that many multiple sclerosis patients have vitamin D deficiency. Additionally, relapses and aggressive disease progression are more common among people with low vitamin D levels. Although the best way to get vitamin D is from sunlight, one can also acquire it from foods like eggs, low-fat dairy products, salmon, and fortified cereals and orange juice.
Turmeric is a spice that is well-known in many parts of the world for its powerful anti-inflammatory properties. It contains curcumin, which is known to fight off inflammation. Turmeric may ease symptoms and even slow disease progression in people with multiple sclerosis. You can add the versatile spice to your meals while cooking or use it in salad dressing.
- Fresh fruits and veggies
Fruits and vegetables are among the most nutrient-dense foods on the planet. They are packed with essential nutrients that help reduce inflammation, like antioxidants and phytochemicals. Also, studies have found that a diet rich in fresh fruits and vegetables can lower the severity of Multiple Sclerosis (MS) symptoms like pain, fatigue, and cognitive impairment. Some of the best foods to add to the diet are leafy greens, berries, bananas, papaya, kiwi, and oranges.
Avocados are yet another excellent source of healthy fats and potent antioxidants. They are also packed with other nutrients that help fight inflammation, like lutein, glutathione, and vitamin E. Plus, health experts strongly recommend that MS patients include avocados in their regular diet as they boost brain and heart health.
These simple, functional exercises can help you stretch and strengthen your hands in order to continue to independently perform everyday activities.
Numbness or tingling in the hands, arms, and legs is often the earliest symptom of multiple sclerosis (MS). But symptoms affecting the hands can also include pain, muscle weakness, tremors, and problems with hand-eye coordination, says Linda Walls, an occupational therapist and consultant for the Can Do MS center in Avon, Colorado, for over 25 years.
All of these symptoms are caused by a disruption in communication between the central nervous system (the brain and spinal cord) and the sensory nerves in the hands. When your hands are affected, everyday tasks — such as writing, typing, getting dressed, and grasping or picking up objects — can become more difficult.
Is there anything that can help? Yes. In a word, exercise. “I recommend exercise to keep muscles moving and stretched, and it also stimulates the nerves to help with sensation,” explains Walls. “The goal is maximizing range of motion and strength so you can maintain the best function of your hands and stay independent with everyday activities.”
Hand exercises can help you maintain or improve your hand function so you’re better able to perform activities that require hand strength and coordination. Plus, the exercises will help with stiffness that may develop from some muscles being tight.
The following hand exercises for MS can also improve your ability to grip and pinch with your hands. Perform the exercises slowly, and pay attention to how you feel. “Do the exercises to a count of 2 or 3 so your muscles have a chance to fully respond and go through the full range of motion”. As your range of motion and strength improve, you can add resistance to increase your hand and forearm strength.
Finger Flexion and Extension
The goal of finger flexion and extension exercises is to slowly increase range of motion and strength.
How to Do It: Bend the fingers of one hand toward the palm to make a fist, then straighten your fingers and stretch out your hand. Start with one set of 10 reps a day, then progress to two sets in a row (or do one set twice a day). Repeat with the other hand.
If one hand is more affected by MS symptoms than the other, you might do two sets on that hand and only one set on the stronger hand. You can also use the less affected hand to stretch the more affected hand. But be careful not to overdo it. “Hand muscles easily fatigue”.
To focus more on strength, hold a rolled-up washcloth or ball of therapeutic putty in your hand as you squeeze and release. Place the washcloth or putty on a tabletop, squeeze it in your hand, then push or roll it back out with your fingers. These objects will provide some resistance. Theraputty, which is available on Amazon and often comes with some pictured exercises. “I recommend a soft to medium resistance, not a firm resistance,” says Walls. “The added benefit of using Theraputty or a washcloth is the sensory stimulation that helps with numbness.”
Hand exercises should always be done in groups, adds Walls. “I have seen too many who work on finger flexion and forget that finger extension is just as important.”
Finger Abduction and Adduction
Finger abduction and adduction exercises are important for improving range of motion.
How to Do It: Straighten the thumb and fingers of one hand. Spread the fingers apart and then squeeze them together. Perform three to five repetitions to start; progress to 10 to 15 reps. Repeat with the other hand.
To add resistance, place a rubber band around your fingers when they’re in the closed position (it should fit snugly), and then spread them apart, pressing against the band. You can also use a small rubber band on two or three fingers at a time.
Finger pinch exercises are effective for picking up and holding small objects such as a button or a coin.
How to Do It: Roll a washcloth or putty into a tube shape. Using your thumb and index finger, pinch along the tube from one end to the other. You can also just do thumb to each finger for coordination and range of motion, says Walls. To strengthen your palm, use your thumb, index finger, and third finger to pinch a washcloth or putty or a Nerf ball. Perform the exercises three to five times with each hand, working up to 10 to 15 reps. Repeat with the other hand.
After working on pinch, take a minute to fully open the hand and stretch the muscles you just worked in the opposite direction to encourage strength and range of motion.
Rice exercises are effective for general strengthening and sensory stimulation to the hand.
How to Do It: Place a large bag (or two) of rice in a big bucket. Place your hands in the bucket and open and close them in these various positions:
- Palms facing each other
- Palms facing away from each other
- Palms facing your body
- Palms facing away from your body
You might also rotate your hands in a clockwise direction, and then counterclockwise, in the rice.
Movement Therapy, or ‘Piano Hands’
“This is a good strength and coordination exercise,”
How to Do It: Sit up tall in a chair, facing a table or desk. Place your hands, palms down, on the edge of the table (your forearms should be hanging off). Lift your fingers up and down, one at a time, as if you were playing the piano. Then move them up and down the imaginary keyboard. You might even do this to real music — play for 20 to 30 seconds of a tune to start. “This can be similar to typing on a computer keyboard”.
You can also try some hand physical therapy or hand occupational therapy, such as playing cards or video games, doing crafts that require dexterity, typing at your computer keyboard, or organizing your desk or kitchen drawers. Doing these exercises helps you focus your attention on developing functional movements and coordination, which will keep you engaged in everyday activities. “Try to use your hands as much as possible for everyday tasks such as picking up coins from the table, writing a note, bathing, using lotion, dressing, and preparing a meal,” says Walls. Also playing board games, building models, and functional activities like sorting nuts and bolts and organizing “junk drawers” in your home. These activities won’t make hand pain go away, “but stretching helps get more blood flowing to your hands and can help you increase movement and manage tightness.
We all respond differently to information about our health. After learning you have multiple sclerosis (MS), you might be stunned, scared, or even relieved to have answers that explain vision changes, dizziness, or tingling. No matter what you’re feeling, you’re not alone.
You can’t figure out everything about MS at once, and you don’t need to. Taking small steps to adjust to your new reality can be empowering in a time of major change. According to the American Psychological Association, active coping strategies like getting organized and making a plan for managing your health can improve mental and emotional well-being.
Create Space for Multiple Sclerosis
It’s normal to feel out of control when you first learn you have MS. You may have a pile of pamphlets crowding your kitchen table and a head full of questions that you forget the moment you set foot in a doctor’s office. You can begin to tame the chaos by implementing very simple organizational techniques that will help you create space for this new aspect of your life.
Put Everything in One Place
Storing all of your printed doctors’ visit summaries, pamphlets about MS, and other resources in a designated spot can help create some order and help you find information when you need it. You don’t need a fancy filing system — a kitchen drawer, an old binder, or simply an orderly stack on your bedside table can make a big difference. In addition to helping you keep track of important papers, there is evidence that controlling clutter is associated with better moods.
Remember Your Questions
Keep a list of questions about MS for your health care provider in a dedicated notebook or on your smartphone. Jot down your questions as you think of them, and bring your list to your appointments so you can remember your questions and write down the answers.
Manage Your Appointments
If you already rely on a digital calendar or paper planner to manage work and family obligations, stick with that method for managing your new doctors’ visits. If keeping a calendar is new to you, consider using what you’ve already got at home, such as a grocery list notepad or a piece of paper and a magnet on the fridge. You can also ask your doctor’s office about phone call or text message reminders that can help you keep on top of appointments.
Track Your Medications
Using an old-fashioned pill organizer is a great way to keep track of an oral medication regimen. You can also use a paper medication tracker. If you’re comfortable using a smartphone, consider downloading a medication tracking app to manage your treatment schedule.
Reach Out for Support
It can feel overwhelming to reach out after receiving an MS diagnosis, but you don’t have to face your diagnosis alone. Support from loved ones, your medical team, and other people with MS is crucial as you embark on a treatment plan and adjust to your new normal. There are a few basic steps you can take to start building your network of support.
Multiple Sclerosis Communities
You may not be ready to talk about your diagnosis with your loved ones right away. You may also not have time or feel comfortable joining an in-person support group. That’s OK. Your local MS Support Group can provide an ongoing emotional boost whenever you feel worried or overwhelmed about life with MS or want to celebrate a victory.
Health Care Providers
Many hospitals and medical practices offer resources that extend beyond your medical appointments. These may include chaplaincy services, health education classes, patient liaisons or nurse navigators, on-site support groups, and referrals to other services.
Friends and Family
Sharing your MS diagnosis with friends and family can be hard. They may be afraid and struggle to react in a helpful way. Try to remember that everyone is doing their best with difficult news. If you’re able, let your loved ones know how they can be most helpful to you during this time, whether that’s helping with household chores or offering a listening ear.
Learn More About Multiple Sclerosis
You might not have known much about MS before your diagnosis, but now you probably want to learn more. Your health care provider is a great resource for information, but you may also want to do your own research. Remember to be cautious of what you read online, especially if someone is offering a quick fix or selling a cure. You can always reach out to your health care provider or patient liaison if you have questions about something you’ve read.
Curcumin, a key ingredient of the spice, may reduce inflammation, but questions remain about its usefulness for MS.
Our stories are medically reviewed by board-certified specialists to ensure that all factual statements about medical conditions, symptoms, treatments, procedures and tests, standards of care, and typical protocols are accurate and reflect current guidelines as well as the latest research.
Variety may be the spice of life, but is turmeric the spice for people with multiple sclerosis (MS)?
More and more people with MS are using complementary and alternative approaches like herbs and supplements to augment prescription medication treatments for symptoms like pain, spasticity, memory loss, and fatigue — even though scientific evidence supporting their use is limited. One of the most popular herbal remedies is turmeric, a spice that is used commonly in cooking, particularly in Asian cuisines.
Turmeric has properties similar to ginger, another popular flavoring ingredient.
Although turmeric has been used to treat the symptoms of a variety of health conditions — including everything from Alzheimer’s disease, rheumatoid arthritis, and prostate and colon cancer to heart disease and type 2 diabetes — its use in MS hasn’t been well studied, at least to date. Still, what’s known about its possible benefits is promising.
“I’m from India originally, and we’ve used turmeric for centuries, both for cooking as well as for medicinal uses,” says Vijayshree Yadav, MD, a neurologist and Tykeson Family Term Professor in wellness research, as well as MS Center director at Oregon Health & Science University in Portland.
“It’s an antioxidant with multiple chemical ingredients, including curcumin, that may have beneficial effects for people with a number of conditions, but there’s still a lot we don’t know,” Dr. Yadav says.
MS was associated with a 28% increased hazard for all-cause mortality (HR 1.28, 95% CI 1.08-1.53), but not with cancer-specific survival (HR 0.98, 95% CI 0.65-1.46), reported Ruth Ann Marrie, MD, PhD, of the University of Manitoba in Winnipeg, and colleagues in Neurology.
“Although multiple sclerosis and its complications remain the most common cause of death in people with MS, cancer is the second or third most common cause of death,” Marrie said in a statement. “Our study looked at whether survival rates for women after a breast cancer diagnosis were different for those with MS and those without it.”
Earlier Canadian research showed the incidence of breast and colorectal cancers was similar between people with and without MS. Breast cancer incidence is of particular interest since several cases of breast cancer had been reported in ocrelizumab (Ocrevus) phase III clinical trials. The drug, which was approved for MS in 2017 in the U.S., carries a breast cancer warning.
In their study, Marrie and colleagues identified female MS patients in population-based administrative data in Manitoba and Ontario from 1994 through 2016, linking the MS cohorts to cancer registries. For each woman with MS and breast cancer, the researchers selected four breast cancer controls without MS, matched on birth year, cancer diagnosis year, and region.
The analysis included 779 MS cases (691 from Ontario and 88 from Manitoba) and 3,116 controls with a mean age of 58 at diagnosis. Most women were diagnosed with stage I or II breast cancer. About half of the study group was diagnosed in 2010 or later, and most lived in urban areas. To read this aerticle in its entireity click here: Breast Cancer and MS
Among the many possible complications of multiple sclerosis (MS) is a reduction in your ability to exhale fully and to cough effectively enough to clear secretions or food from your airway, says Anthony Reder, MD, a multiple sclerosis specialist and professor of neurology at the University of Chicago. A serious consequence of these changes is a higher risk of respiratory infections like pneumonia. Changes in breathing function can also cause fatigue, as you work harder to breathe and supply your body with the oxygen it needs.
How MS Can Affect Your Breathing
There are a number of ways that MS can lead to breathing problems, including the following:
Lesions in the Brain
As multiple sclerosis progresses, lesions in your brain and spine can affect almost every aspect of your physical functioning. It’s possible that brain lesions could change your respiratory function, says Zulma Hernandez-Peraza, MD, a neurologist at the University of Illinois Hospital and Health Sciences System in Chicago.
Lesions that disrupt the signals from the brain to the lungs can result in a condition known as central sleep apnea, in which breathing stops and restarts repeatedly during sleep, notes Dr. Reder. Symptoms of central sleep apnea include waking up abruptly with shortness of breath, having shortness of breath that improves with sitting up, insomnia, daytime sleepiness, and chest pain at night.
A more common form of sleep apnea, where the upper airway becomes intermittently obstructed, can also occur in people with MS if the muscles that normally keep the airway open become slack due to lesions in the brain, adds Reder. Obstructive sleep apnea is associated with snoring and obesity.
These can cause weakness of the breathing muscles and also restrict your ability to get air in and out of the lungs, says neurologist Staley Brod, MD, professor of neurology at the Medical College of Wisconsin in Milwaukee. “Weakness can affect breathing,” says Dr. Brod. Spasticity in the muscles that help with inhaling and exhaling could also contribute to the problem.
“A lesion in the cervical spine creates the ‘MS hug‘ sensation, which can cause the feeling of shortness of breath,” adds Dr. Hernandez-Peraza. “This is usually just an unpleasant perception. When tested, the oxygen levels in your blood should be normal.”
One of the side effects of the MS disease-modifying drug Gilenya (fingolimod) is a reduction in some measures of breathing function, says Reder. Some types of medication, such as tranquilizers, muscle relaxants, and opioids, can also slow or reduce breathing.
In 2019, the U.S. Food and Drug Administration (FDA) issued a warning that serious breathing difficulties may occur in people who have respiratory risk factors who are taking gabapentin (Neurontin, Gralise, Horizant) or pregabalin (Lyrica, Lyrica CR). According to the National Multiple Sclerosis Society, these pain medications (known as gabapentinoids) are sometimes prescribed for people who have multiple sclerosis. Talk to your doctor if you have respiratory risk factors including (but not limited to) chronic obstructive pulmonary disease (COPD) or older age and you have been prescribed these medications, especially at high doses, notes Reder. To read this article in its entirty click link Breathing issues with MS
“MSAV 2021 Brian Mason Respite Camp”
The MS Alliance is now accepting applications to be considered to attend the MSAV 2021 Brian Mason Respite Camp,
August 20 – 23, 2021 at Smith Mountain Lake.
- Diagnosed with MS, Caregiver/Spouse or minor child at home
- Your life has been severely affected by MS
- Member of Roanoke Valley MS Support Group(s) or an active participant of the MS Alliance of Virgnia
- Limited recreational opportunities
- Mask and/or gloves may be required
- Limited volunteer opportunities are available
If interested send email with your name, complete address, phone number and tell us
“How Respite Camp can help you” before July 15, 2021 to firstname.lastname@example.org
Put in the Subject Line: 2021 Respite Camp.
It is no secret that MS is an expensive disease! The average person with MS spends a large portion of their income on their treatment, so we can use all the help we can get. That is why I put together a comprehensive list of resources that can help cover the costs of medications, adaptive equipment, cooling products, and MRIs.
Medication Copay Assistance for People Covered by Private Insurance
There are coupons for pretty much any type of prescription medication (for any type of medical issue) available at www.goodrx.com (just type in the name of the medication, and coupons for local pharmacies will be listed, along with printable coupons)
Ampyra: Ampyra Patient Support Services (888)881-1918
Botox: Botox Savings Card www.botoxsavingscard.com
Myrbetriq: www.myrbetriq.com for printable copay saving card
Disease Modifying Therapy (DMTs):
All DMT’s have patient support services that will work with each person to lower their copay to as low as $0, and some even help pay your deductible if you meet it because of your DMT. Links to all DMT patient support services (including websites and phone numbers) can be found on the MS Alliance of Virginia Website
Medication Copay Assistance for People covered by Public Insurance
People with public/government insurance can not use coupons or patient assistance programs due to the anti-kickback law. There are several nonprofit organizations that can help cover medication expenses:
The Assistance Fund- (877)245-4412
HealthWell Foundation (Medicare only)- (800)675-8416
Patient Advocate Foundation Co-Pay Relief Program (Medicare, Medicaid, Military plans only)- (866)512-3861
Patient Access Network (PAN) Foundation (Medicare only)- (866)316-7263 Medication
Copay Assistance for People Without Insurance:
For DMT’s contact the patient assistance program for the medication to find out how to qualify for free medication.
Some brand name medications used to treat symptoms also have programs through the manufacturer (Such as Pfizer’s RxPathways which will offer free Lyrica to those with a financial need). Check the pharmaceutical company’s website for information on programs, and instructions on how to apply.
MRI Copay Assistance
Free Cooling Equipment
Financial Assistance for Adaptive Equipment
(wheelchairs, ramps, stair lifts, vehicle hand controls etc.…)
MSAA Equipment Distribution Program (bathtub transfer benches, shower chairs, bathtub safety rails, elevated toilet seats, seated walkers, grab bars, quad canes, adapted drinking cups, grab bars, hand rails, easy-grip utensil sets, leg lifts, manual wheelchairs).
Every state has a vocational rehabilitation agency that helps people with disabilities access equipment that enables them to work.
Check the https://msallianceofva.org/ for additional adaptive equipment resources.
Hospital Based Care/Testing
Not-for-profit hospitals often have programs that offer free and/or discounted care for patients with financial need (these can help with the cost of lab work, imaging, and other testing), but most programs are not well advertised. Find out which hospitals in your area are not-for-profit, and contact them to inquire about available programs. Many for-profit hospitals also have charitable care programs, so it is always worth asking.
Exacerbation, relapse, flare-up, attack: these are all names for the same thing with regard to Multiple Sclerosis. The general definition of this event is the occurrence of new or worsening of old symptoms lasting for more than 24 hours and taking place at least 30 days after a similar event. While this can be a standard occurrence for those with Multiple Sclerosis, not everyone actually understands what’s going during this period. Understanding what is happening during an exacerbation is critical for those with MS. With that in mind, I’ll do my best to help break it down as simply as I can.
What’s happening to the body during an MS exacerbation?
During one of these moments, the disease has caused your own immune system to attack your body. Specifically, your immune system begins to assault your central nervous system. Its weapon of choice? Inflammation (caused by various immune cells). This inflammation damages myelin, a fatty substance that surrounds and helps insulate our nerves. This insulative layer makes sure our nerves properly conduct the electrical signals that our brain sends to the other parts of our body (think of it as the plastic covering on an electrical wire). When this layer is damaged, those signals don’t move fast enough or at all, which is where we start to see our symptoms. Can’t lift your leg fast enough or at all? The myelin around a nerve between your brain and leg has been compromised and the signal isn’t traveling as efficiently as it should be. Not only does our immune system damage the myelin, but it also damages the cells needed to regrow it. To read this article in its entirety click the link: Inside a MS flare up
Do not Let Fears Get in Your Way
A driving rehab specialist is a specialized occupational therapist who tests your skills. “An MS driving evaluation is for the driver to understand what has changed and what are the strengths you can bank on? How can you take advantage of every strength there is to keep you on the road?” explains Elin Schold Davis, O.T.R./L, practice manager for community access and driver initiatives for the American Occupational Therapy Association (AOTA). After the evaluation, they will recommend new car equipment, if you need it, and teach you to use it.
Hand controls let you operate both pedals with one hand rather than a foot, which may get too weak to push down safely.
How they work: One hand operates a lever, either on the left or right side, that is attached to the steering column. “Usually, you’re pushing forward to brake and back for gas. So, you are doing both gas and brake with one hand and steering with the other,” says Terri Cassidy, O.T., a certified driving rehabilitation specialist in Colorado Springs, CO. They are game-changers, and most people pick up driving with their hands quickly, Cassidy notes.
Steering with one hand is easier if you have a spinner knob, especially if your hands are stiff or spasm.
How they work: Spinner knobs look like doorknobs and attach to the steering wheel. Your hand holds the knob and spins the wheel that way. “It makes these tight turns in a parking lot a lot easier,” says Cassidy. Press the release button and the knob comes off if someone else drives the car.
A Handy Bar
Think of this as a portable grab bar that helps you get out of the driver’s seat, especially if you have an SUV or a low car.
How it works: The handy bar is about 9 inches long and weighs less than a pound. It fits into the U-shaped bolt on your car door so you can grab the easy-to-grip ridged handle. You do not have to modify your car in any way to use it. “It can be really helpful getting up or down, just giving you stability and something to push on,” Cassidy says.
This is another not-too-spendy item that makes it easier to get in and out of the car when you do not have much leg strength, says Cassidy.
How it works: Fasten this double-layered seat cover to the car seat so it is secure. You pull the top layer towards the door and then sit on the edge of the seat. The layer moves with you, so it helps you swivel easily into the seat.
Blind Spot Mirrors
“If somebody has trouble with trunk rotation or looking over their shoulder, extra mirrors may be helpful in terms of safety,” says Cassidy. These can include an extra-long rear-view mirror as well as ones to add to side mirrors.
How they work: Most blind spot mirrors stick on to the car’s side mirrors and give you a wider view of what is behind you. Some have better optics than others, and all are inexpensive. “Like everything, mirrors are only good if you use them,” says Cassidy, who says they require a bit of training.
Seats That Swivel Out
When climbing up into your van or SUV becomes impossible, these specialized seats do the job for you.
How they work: Push the remote button, and the seat swivels, comes out of the van, and lowers to your level for easy access. These seats are good for drivers and passengers, so when you ride instead of drive there is less wear and tear on caregivers who do not have to lift you in, says Davis. That way, “your vehicle can support you as a team, to stay more independent,” she adds.
If you are wheelchair bound, you need two types of equipment. One is the lift to get your wheelchair in the van, whether you are a passenger or driver.
How they work: These automated lifts slide out and down with a push of the button. They can be installed for the side of your van or the back. Again, they can save caregivers the wear and tear of lifting the wheelchair and stowing it themselves, says Davis. Downside? They are not cheap, averaging between $3,000 and $5,000.
If you are going to stay in your wheelchair to drive (or ride shotgun), you will need to keep it steady. These restraints keep the chair from moving around.
How they work: There are two types of locking systems. One is a docking device that uses a pin to lock the wheelchair into place when you scoot behind the wheel (or passenger side). The other type uses manual (and retractable) tie-downs. Your car will have to be specially outfitted so you can use the wheelchair instead of the seat.
This is a tag that you hang up in your car that allows you to park in handicap spaces, which are closer to entrances. Even if you walk with a cane or walker, parking far away and having to walk to the store can be difficult, says Dr. McGinley. “So, I think that it’s a reasonable discussion for MS patients to have with their providers,” she says.
How they work: Usually, your doctor will sign a form that you take to your local city hall or DMV for the tag. A temporary tag typically lasts up to 12 months, while a permanent tag lasts up to five years.
Think of Your Car as a Confidence Booster
“I end up talking to people a lot about this adjustment to disability—why it’s sometimes a barrier for not coming in sooner,” Cassidy notes. “In my mind you are winning if you can still drive your kids to school; it doesn’t matter how you’re accessing gas and brake. But I know there can be a stigma there in terms of people saying, ‘I want to keep using my legs because that means I’m the same me.’” But Cassidy says these adaptations can be fantastic for your confidence since driving can represent freedom.
Finding Ways to Pay for These Changes
Outfitting your car isn’t cheap, but you may be able to get some funding through the Multiple Sclerosis Foundation or another organization for MS patients, Cassidy suggests. One option for people looking to buy a new (or new to them) car: Talking to the dealer. “Most of the car manufacturers will do like a thousand-dollar allocation toward a modification,” says Cassidy. So, it is worth your while to negotiate with the dealer. After all, every bit helps.
Multiple sclerosis is a disease that can cause a huge number of different symptoms that often vary from person to person. We talk often about the “common” ones like fatigue, pain, temperature intolerance, cognitive impairment, spasticity, speech issues, numbness, and depression.
Unexpected MS symptoms
Today, I want to talk about some of the lesser-known and stranger symptoms we can encounter. The “weird” symptoms (though really, aren’t all our symptoms weird?). It should be no surprise that a disease that attacks the brain and central nervous system can have such a varied range of symptoms, these are arguably the most complex parts of our body and so much is still unknown about how they work. So, there are many symptoms’ people experience and never even consider that they were caused by MS. I am going to mention a few here, but it in no way will be all of them!
Feeling like my legs are wet when they are dry
I am going to start off with one that I experience often and felt crazy when I spoke to my doctor about it. It is a feeling of wetness in my limbs. For me, it often happens with my legs (but this happens to other parts of the body too), I will suddenly feel like my legs are soaking wet. Like I just stepped out of a pool. It is such a realistic feeling that I will instinctively reach down to check on them. My hand feels dryness, my legs feel wet. It is an extremely weird sensation. My eyes and my hands are telling me that my legs are dry, but my legs are telling me they are wet. I have since learned that many people with MS get this or a similar feeling. Along with wetness, I will often get other weird sensations, like vibrations in my leg. It literally feels like a cell phone is vibrating in my pocket, even though my phone is on the table.
A bone-crushing MS “hug”
One weird symptom you may have heard about is the dreaded MS hug. The hug is essentially an assortment of pains and sensations around the muscles between your ribs. The result is intense squeezing and crushing feelings. Like someone has wrapped around you and is giving you a crushing hug. Some people will feel more like pressure, burning, numbness, or tingling than squeezing, but regardless, it is extremely uncomfortable. It is also something that many people do not realize is caused by MS.
Electric shock sensation
Lhermitte’s Sign, also called Barber Chair Sign, is an electric shock sensation that happens when the neck is tilted down. The electric shock feeling will often go through your arms and legs when you move your neck. While it is often when you tilt your head down, suddenly moving your neck in other directions can trigger it, too. Imagine feeling a sudden electric jolt through your body just because you moved your head? It is awful. Now imagine the consequences of such a thing if you were driving or operating dangerous equipment, it is not only unpleasant, but also dangerous.
Getting sick more easily
This is more a byproduct of treatment than the actual disease, but there is a tendency for those battling MS to get other illnesses more easily. The very nature of the disease is that our immune system is not working right (it is attacking our own bodies), so many treatments will often decrease the effectiveness of our immune system. That can be good for battling MS, but it can also mean that we are more likely to catch every other bug out there. If I am out in a big crowd, I can almost guarantee I will come back with something. Picking up an illness, even something like the common cold can be a nightmare. It’ll often last much longer for me than others and can also ramp up my MS. Ashley does a good job talking about some other aspects of getting sick here. My point is that we are much more susceptible and need to remember that.
Headaches and migraine
Not always thought of as an MS symptom, it is now being recognized as being much more common than was previously thought. It has even been mentioned that migraines may be up to twice as common in those with MS than the normal population. Studies are still being done, however, many people I know with MS suffer from migraines, which can be extremely debilitating.
Dizziness and vertigo
Another not so well-known set of symptoms is dizziness and vertigo. Feelings of dizziness and feeling off-balance can be quite common among those with MS. When coupled with muscle weakness and foot drop, it is no wonder falls are such a common problem among MS patients. Vertigo, which is the sensation of you or your surroundings spinning, may be less common but can be extremely hard to deal with. I, unfortunately, have experience with vertigo; during one relapse, I suffered from it almost constantly for a couple of weeks. It makes every aspect of life incredibly difficult.
About one million people in the U.S. have multiple sclerosis, Healthline¹ reports, and another 200 people are diagnosed every week. Often known as MS, this disease can affect people of all backgrounds and any age.
If you or a loved one has MS, it’s important to understand what the disease is, what its symptoms are, and how it’s treated. Multiple sclerosis can be a difficult disease to live with, but understanding this disease can improve your quality of life.
Early Warning Signs of Multiple Sclerosis
The National Multiple Sclerosis Society (NMSS)² writes that multiple sclerosis is an autoimmune disease that causes damage to the body’s myelin, the protective sheath that covers nerve fibers. This can cause problems with nerve functioning and eventually lead to permanent nerve damage.
One of the most common early symptoms of multiple sclerosis is a vision problem, NMSS³ reports. There are several vision problems associated with MS, but most of them have a good prognosis for recovery.
In some cases, vision problems are caused by optic neuritis, which is the inflammation of the optic nerve. This can lead to blurred vision, dark spots, or blindness in one eye. Fortunately, it’s treatable, and most people make a full recovery. People with MS also may experience diplopia, or double vision, which is caused by weakness or lack of coordination in the muscles around the eyes.
Numbness or tingling in the arms, legs, or face is another common early sign of MS. The numbness usually begins as a mild issue but can worsen until it affects functioning. Some people with MS have difficulty walking because of numbness in their feet, while others may have trouble writing or holding objects because of numbness in their hands.
Everyone with MS experiences the disorder differently, so no two people will develop the exact same symptoms in the same order. Other early signs of MS include the following:
- Muscle spasms
- Dizziness or difficulty balancing
- Bladder problems
- Brain fog or cognitive issues
to continue to read this article in its entirety click this link: Multiple Sclerosis Facts Everyone Should Know
When it comes to workouts, fighting through the exhaustion of MS fatigue is no easy task. I am often asked how fatigue affects my training and how others with multiple sclerosis (MS) can get great workouts despite this common problem.
I wish there were a one-size-fits-all answer to this question, but since we all have different MS symptoms and limitations related to our MS, and we’re all in different places in life’s journey, I will do my best to give you some general guidelines and suggestions to help you maintain a regular exercise program.
The information I am providing is the same advice I give to all my personal training clients — and anyone with MS wanting to get the most out of their exercise routine. to read this article in its entirety click her: MS Fatigue during exercise
The damage that multiple sclerosis (MS) causes in the brain isn’t visible on the outside, but it can cause a wide range of disruptive symptoms. Here’s what’s happening inside the MS brain, and how to help protect this crucial organ.
Multiple Sclerosis: It’s in Your Head
Multiple sclerosis (MS) is a disease of the central nervous system that causes damage to your brain, spinal cord, and optic nerves. It’s characterized by lesions, or areas of tissue damage that occur when your immune system behaves abnormally and attacks these areas.
While many symptoms of MS throughout the body can be caused by lesions in either the brain or the spinal cord, cognitive symptoms of MS — those related to your memory, language, and problem solving — are believed to be caused only by lesions in the brain.
Brain lesions are a hallmark of MS, but they’re not the only way MS can affect your brain function. MS can also contribute to brain atrophy, or shrinkage, over time — a process that occurs in all people as they age, but typically happens much more quickly in people with MS. Brain atrophy, in particular, can contribute to cognitive symptoms of MS.
What Happens When MS Attacks the Brain
In most people who have MS, symptoms of the disease arrive or get worse suddenly during flares of disease activity. During an MS flare, “What we think happens is that there is inflammation coming in from the bloodstream, and that’s the first step in a relapse or new lesion” in the brain, explains Anne Cross, MD, a professor of neurology and MS specialist at Washington University School of Medicine in St. Louis.
According to Dr. Cross, this process involves immune system cells and other substances entering the brain and not just acting on their own, but also “recruiting” local cells to secrete pro-inflammatory substances in the area. Some of these cells and substances attack myelin, a white fatty substance that covers nerve fibers in the brain and elsewhere.
A nerve fiber (also known as an axon) is a long, narrow part of a nerve cell (neuron) that extends from the main body of the cell. It transmits signals from the nerve cell to other cells and tissues. Depending on the specific cell or tissue it connects to, a nerve cell can play a role in any number of the body’s normal functions, from thinking and talking to walking and moving your arms.
Myelin acts as a protective layer on the outside of nerve fibers. When this layer is damaged, nerve fibers can become exposed, which may cause them to transmit signals erratically or less efficiently.
“If you have an active MS lesion, under the microscope it would have lots of inflammatory cells there, and it would have greatly reduced myelin, but the nerve fibers would mostly still be there,” says Cross.
How Brain Lesions Form in MS
Sometimes, loss of myelin in the brain does nothing to interfere with nerve signals, says Cross. “It depends on how much of it is lost in a bundle of nerve fibers,” she explains. But when enough myelin is lost from enough nerve fibers in an area, this lesion will be visible on a magnetic resonance imaging (MRI) scan of the brain — and MS symptoms may develop.
Even without medical treatment, brain lesions in MS don’t simply keep growing and growing. “The body calms down these lesions and surrounds them, and they stop,” says Cross.
If a lesion forms but doesn’t develop past a certain point, it may cause few or even no symptoms. “You might see a region that’s demyelinated, but the nerve fibers are still there and haven’t been damaged too much,” Cross explains. “And that person may have no functional deficits from that lesion.”
But in some lesions, the nerve fibers themselves become heavily damaged and die off as a result. That stops the affected nerve cells from sending signals and can result in a permanent loss of cognitive or physical function.
Brain Atrophy: Why Volume Loss Is a Concern
All people tend to lose brain volume as they age — a process known as atrophy. But in people who have MS, this process typically happens much faster.
It’s normal to lose 0.1 to 0.5 percent of brain volume each year as you age. However, in people with MS, this range is typically 0.5 to 1.35 percent, according to an article published in September 2016 in the journal Multiple Sclerosis and Related Disorders. This greater atrophy may begin even before an MS diagnosis.
When nerve fibers die off in significant numbers due to an MS lesion, myelin is lost from the areas of the brain outside that lesion. That’s because nerve fibers can be very long, extending from one area of the brain to another. A lesion may affect only a small portion of a nerve fiber at first, but when the nerve fiber dies, myelin is lost from the entire length of that fiber beyond the lesion.
There are two main types of tissue in the brain: gray matter and white matter. Gray matter consists of the main bodies of nerve cells, while white matter consists of the nerve fibers that extend from these bodies. White matter gets its color from the myelin that surrounds nerve fibers. So when myelin is lost in areas outside lesions, it tends to cause atrophy of white matter.
But brain atrophy due to MS isn’t limited to white matter. Loss of nerve fibers can lead to the death of entire nerve cells, which means loss of the main nerve cell bodies that make up gray matter. This gray matter atrophy “is more associated with functional consequences than white matter atrophy” is, says Cross.
Scientists are still trying to figure out which symptoms are likely to be caused by atrophy of particular areas of the brain. “The human brain is so interconnected that it’s difficult to say, ‘This dysfunction is due to that region,’” Cross explains. “Memory and cognition are particularly difficult to pin down to any particular region.” Continue reading this article in its entirety click here: What MS looks like in the Brain