Eating To Feel Better When You Live With MS

By Tamara K Sellman

People with MS routinely talk about the diets they stick to and how the routine improves their lifestyle for therapeutic reasons. I know that I'm consistently asked what kind of MS diet I follow.

But here’s the thing: not everyone goes on a special diet following an MS diagnosis. I didn’t, nor was it encouraged.

What does the research say about the best foods for MS?

First, my neurologist pointed out that the National Multiple Sclerosis Society (NMSS) provides no official dietary guidelines for people with MS, despite popular assumptions. In fact, here's a quote directly from the NMSS: “As of 2020, there is no definitive diet that has been scientifically proven to be beneficial in changing the course of MS.”¹

Following her review of my diet at the time of diagnosis, it confirmed that my diet was already pretty healthy. Rarely do I eat fast food or salty or sugary snacks. I’m both a scratch cook and kitchen gardener. By and large, the nature of cooking and eating in our household tends toward unprocessed, “slow” whole food, usually eaten in moderate quantities.

This doesn’t mean I don’t think about what I eat and how it affects me. I was diagnosed with inflammatory bowel disease (IBD) 30 years ago. I’ve spent a lifetime keeping food diaries to manage it.

How can we support our health while living with MS?

After starting on Tecfidera in June 2013, I discovered my gastrointestinal tract definitely needs to eat certain foods while taking it for both morning and evening doses to defend against extreme cramping and diarrhea. So I included more eggs and peanut butter to make my DMT regimen more comfortable to digest.²

While I don’t actively diet, I do notice how foods make me feel. My personal observations describe the impact food has on my body. I also don’t have food intolerances or allergies. I don’t suggest anyone with MS change their eating habits to mirror mine.

Ultimately, it’s up to us as individuals to decide how we support our health while living with MS. Those decisions may look very different from mine. That’s okay! MS is a snowflake disease; no MS treatment, eating plan, exercise regimen, or other therapeutic approach is going to succeed for every person.

Fruits and veggies of course!

If I’m feeling a little “punk,” I often do a quick review of what I’ve consumed over the last few days. Usually, there’s a repeating pattern of too much meat and too few vegetables. Which is tragic, because I love vegetables! But sometimes the thing you grab for a quick bite doesn’t include these important meal boosters.

I tend to respond well to certain veggies, in particular: broccoli, edamame beans, beets, cucumbers, iceberg lettuce, mushrooms, and spinach. Also, one thing I learned from day one following my IBD diagnosis is to follow the “three Fs”: Fluid, fiber, and fitness. Your best way to incorporate fiber into your diet is through your veggies.

I’d be remiss if I didn’t also include fresh fruit in this category. Grapes, apples, nectarines, watermelon, pears, pineapple, and oranges serve as favorites that leave me feeling great!

Eggs keep me sunnyside up

If I had to choose one animal protein to eat for the rest of my life, I’d choose the humble egg. I feel energized and sharp-minded after having eggs for breakfast. An afternoon snack of a deviled or hard-boiled egg definitely keeps me going until dinner.

It turns out that, aside from being extremely nutritious, eggs are anti-inflammatory. They also promote brain functions such as memory and processing and provide tryptophan, a building block of serotonin, the “happiness” molecule.³

Soy products make me feel better

Some may disagree, but I think soy doesn’t deserve its suspect reputation. As recently as this year, research continues to show that, in studies of human beings, isoflavones, the key phytoestrogen in legumes, including but not limited to soybeans, do not pose a risk to our health and well-being.⁴

They definitely make me feel better overall. My body digests soy foods like tofu, edamame beans, and other soy-based products far more readily than red meat.

My brain works better if I eat nuts

I often marvel, when I crack open a bag of whole shelled walnuts or pecans, at how much they look like little brains. In their case, the saying “you are what you eat” may ring true.

I eat nuts daily, with my breakfast cereal, for snacking, on salads, stirred into yogurt, or as trail mix. I find that I experience far less brain fog as long as I eat nuts, and research bears out their brain-strengthening benefits.⁵So, what are some foods that have made you feel better across the span of your MS journey?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein.

 

 

Cancer Risks in People with MS

 

A recent study shows people with multiple sclerosis may have a small, increased risk of cancer compared to people without MS. This increased risk is highest for bladder, brain and cervical cancers. It’s critical to understand cancer risk in MS, because many cancers are preventable or treatable, with proper screening.“What we found for the most part is that cancer risk wasn’t different in people with MS than people without MS — particularly for some of those most common cancers — breast cancer, colon rectal cancer and lung cancer,” says Ruth Ann Marrie, MD, PhD. “We did however see some increased risks for a couple of cancers.One was bladder cancer. We also saw more brain cancers but that largely looked like it was some of the more benign cancers you would see in people who are getting a lot more MRIs than everybody else so that was overall fairly reassuring. Then we saw a small signal suggesting ovarian cancer was more common in people with MS.”Marrie co-led the 2020 Canadian study which examined the health records of 53,984 people with MS and 266,920 people without MS across two Canadian provinces.A French study, published in 2024, built on Marrie’s research by using 10 years of records from a French healthcare database to look for associations between rates of cancer and cancer screening in 140,649 people with MS and 562,596 people without MS who were of similar age, sex and residence.This study found people with MS had a 6% increased risk of developing any type of cancer compared to people without MS. Risk varied by cancer type and age:

• People with MS had an increased risk for bladder cancer, brain cancer and cervical cancer.
• People with MS had a lower risk of prostate cancer, colorectal cancer and breast cancer.
• Cancer risk was higher in people with MS younger than 55 years and decreased in people with MS 65 years and older

Marrie said bladder cancer is what concerns her most for her MS patients — especially those with permanent catheters or those who suffer from frequent infections.“That (increased risk) highlights the importance of trying to do what you can to prevent bladder infections and having regular follow up – especially if you have an in-dwelling catheter, a catheter that remains in your bladder, because you’re unable to empty it out appropriately on your own,” Marrie says. Marrie stresses the importance of keeping up with recommended cancer screenings.

No MRI Change but Worsening MS Symptom

By Devin Garlit

You’ve just had your yearly MRI and there have been no changes, no new or larger lesions; however, you know your condition has worsened since your previous exam.

Understanding worsening MS symptoms but no MRI change

What’s going on? How is that possible? These are common questions and it’s a scenario that many people with multiple sclerosis go through at some point in their life with the disease. While the MRI is a key diagnostic tool for diagnosis and monitoring MS progression, it does not always paint an accurate picture of what’s going on. So let’s talk about some reasons your condition is worsening but your MRI isn’t showing it.This or That

Have you noticed symptom changes but no changes to your MRI before?

• 93%

  Yes
• 6%

  No

Flares can be deceiving

A key fact about MS that a lot of people don’t seem to understand is that the disease causes damage that cannot be undone. The term “relapsing-remitting” often gives people the impression that they will have an exacerbation (aka relapse, aka flare-up) but then return to normal when it’s over. That may often appear to be the case, as inflammation does go down, but irreversible damage has still been done.

The disease caused your immune system to attack and eat away at the lining around your nerves (myelin) which interrupts the way the brain communicates with the rest of your body. The immune system conducts this attack by using inflammation.

Consider previous damage

When an exacerbation is over, the signals may again cross along the damaged nerves with no issue (which will look like everything is back to normal), or they may not. One reason for that is that the inflammation (which also slows these signals) that came along with the exacerbation is now gone.¹

The brain is also very good at working around damaged areas, re-routing signals to use the best path, which is another reason people may seem like they’ve fully recovered. Those damaged areas are still there though, so you may feel like your symptoms are worsening, but there will be no new change on your MRI because it is really just previous damage that is rearing its ugly head.

There is such thing as silent progression

There are many folks with MS that don’t have a lot of noticeable relapses but over a long period of time end up incurring significant levels of disability. This can happen so gradually that the patient may not even notice it at first. This is often referred to as “silent progression” and isn’t marked by noticeable relapses and lesions on an MRI.

Instead of the inflammation that comes with a relapse, it’s thought that the real culprit here is actually brain atrophy. Silent progression is something that is normally noticed in those that have previously been diagnosed with relapsing-remitting MS. Another term you may hear for this is “PIRA”, which stands for progression independent of relapse activity. This type of slow, not always noticeable, progression is something a lot of folks don’t think about. There is a tendency to be wary of relapse-type events when there are other ways this disease can affect you.

Other MRI considerations

If you are still having noticeable issues and your MRI looks normal, you should always ensure that your MRIs are of both your brain and your spine, no matter what your previous history has been. You may have only had lesions in the brain in the past, but suddenly one is in your spine.

Also, make sure the person reading your MRI is experienced enough to know what to look for. My point here is simply to never become complacent in your care. A doctor who may have been skilled enough in your first few years may no longer be able to help you now. Never feel bad about seeking another opinion and advocating for yourself.

Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!

Devin

Unusual Symptoms of MS

 

MS: Strangest Symptoms From Head to Toe

Extreme fatigue, clumsiness, weird prickly sensations, sluggish thinking, wonky vision -- these are classic and common first symptoms of multiple sclerosis, or MS. But the expected stops here. Damage to the central nervous system, aka your brain and spinal cord, is what causes these symptoms. That’s a wide range of functions that affect many different people. So it can show up in some strange and varied ways.

Trapped in a Bear Hug

It’s not a warm and cozy kind of hug. Called banding, this MS symptom feels like something’s squeezing you firmly about the chest and won’t let go. It can strike anywhere between your waist and neck, or just on one side. You might have pain or breathlessness. It happens when damage from the disease blocks or garbles the messages from your nerves. Spasms in the muscles between your ribs trigger the tightness. It often passes on its own.

Out-of-Control Laughing or Sobbing

Pseudobulbar affect, also called PBA or emotional incontinence, prompts random outbursts of tears or laughter that have nothing to do with how you feel. Nerve damage in the part of your brain that controls emotions can cause your responses to get all mixed up. You might worry about it happening when you’re in public, or in a serious setting. The FDA has approved a drug to treat PBA. Antidepressants can help, too.

An Itch You Can’t Scratch

It’s the itch that isn’t. A sudden, intense tingle crops up out of the blue, anywhere on your body. But there’s no skin irritation or allergy to scratch or apply rash cream to. This kind of itch doesn’t stem from your skin. Dysesthetic itching is a nerve-related sensation that passes quickly. It’s treatable with meds for epilepsy. Carbamazepine (Carbatrol, Epitol, Equetro, Tegretol, Tegretol-XR), gabapentin (Gralise,Horizant, Neurontin), and phenytoin (Dilantin, Phenytek) are a few.

Shocking Face Flashes

Nerve damage can trigger trigeminal neuralgia, a burning, stabbing, or shock-like pain in your cheek or jaw. It might fade fast or linger for a few minutes. Though rare, it can be a first symptom of MS. You might feel it come on as a tingle, numbness, or ache on one side of your face, like dental pain. Anticonvulsant meds such as carbamazepine, lamotrigine (Lamictal), or oxcarbazepine (Oxteller XR, Trileptal) can help.

Fiery Feet

Dysesthesia is an unpleasant “altered” sensation like burning, prickly pins-and-needles, numbness, and creepy-crawlies in any part of your body. For example, your feet might suddenly feel scalded, with no heat source -- or damage -- at all. Your brain gets distorted nerve signals, so it struggles to relate to something it recalls or imagines. Sometimes it comes up with some pretty crazy stuff. You can treat the weird feelings with nerve pain meds. 

Hard to Swallow

Swallowing isn’t as simple as it seems. The nerves and muscles in your mouth and throat must work with your brain. With MS, the muscles you need to do it can weaken. Mixed-up nerve signals and sensory distortions can make it hard to chew or control the food or liquid in your mouth. Or you might feel there’s something stuck in your throat when there isn’t. It usually happens at a later stage of MS, but it can show up earlier, too.

Spine-Tingling Shock

Lhermitte’s sign is really a symptom. It’s a sudden “electric” zap that shoots down your spine and legs. It happens usually when you flex your neck forward, as when you get your hair trimmed. (Another name for it is the barber chair sign.) Lesions in the cervical spine -- your neck area -- cause it. Lhermitte’s goes away as quickly as it comes, so it typically doesn’t need treatment.

Blurred Vision

Damage to the optic nerve (optic neuritis), which links your eye to your brain, can trigger something called Uhthoff’s phenomenon. This means your vision briefly goes blurry when your body temp rises. (Your other MS symptoms may get worse, too.) Exercise, hot baths, warm weather -- even hair dryers -- can all make eye-to-brain signals iffier than usual. It can help to take a cool shower, use a gel pack, and drink lots of cold water before you exercise or go out in the heat.

Optical Illusions

Another optical trick MS can play is the Pulfrich phenomenon. Optic neuritis triggers this one too. It’s a 3-D illusion caused by a conflict in your vision. Let’s say an object is headed toward you in a straight line. Instead, you might see its path as an elliptical orbit. An oncoming car might appear to swerve toward you, or you’ll miss a ball as you try to catch it.  A special filter in front of one eye can help balance your vision.

Sudden Spasms

Abrupt, brief spasms called paroxysms happen when electrical discharges fire in damaged areas of your brain. They might surge through your arm or leg, or the muscles you use to eat and speak. Although they can repeat several to many times a day, the bout usually ends within a few months. While scary, they’re not the same as seizures. You can treat them with antiepileptic meds, such as carbamazepine, lamotrigine, or oxcarbazepine.

Migraines

Migraines are sudden headaches that can last from several hours to days. They can sometimes be the first MS symptom. People with MS are twice as likely to have them. They can bring on nausea or make you sensitive to sound and light. This can keep you from your regular activities. People with MS seem to have family histories of migraine, so researchers are looking for a link.

Hearing Problems

What’s that you say? Rarely, hearing problems can be a first symptom of MS. It might have a link to swelling and scar tissue near your auditory nerve, which carries info to your brain. Plaque buildup on the nerves along this pathway can lead to it, too. These episodes usually improve, and permanent deafness is rare.

Vertigo

If you have vertigo, you may feel like you -- or the area around you -- is spinning. It can throw off your balance way more than just dizziness. You might also feel lightheaded or queasy from the sense of motion. It happens to about 1 in 5 people with MS. It can stem from damage in the same pathways that control your hearing and vision. Treatment can include physiotherapy, which studies how your movements affect it.

 

Some Things I Wish People Knew About MS-Related Fatigue

 

Devin Garlit

 

Of the many symptoms that plague those of us with multiple sclerosis, one of the most common is fatigue. It’s such a common symptom that the National Multiple Sclerosis Society estimates that fatigue affects at least 75% of those with MS.

Sadly, fatigue is a symptom that can be hard to comprehend if you haven’t actually experienced it. While the topic of fatigue has been covered a lot, I wanted to write something that could be shared with those who don’t have MS, those who may not understand fatigue. Basically, some things that I wish everyone knew about fatigue. So here we go!

MS fatigue is not just being tired

MS-related fatigue is NOT the same as being tired. You are tired when you’ve expended a lot of energy or had a long day. Our fatigue is not caused by losing out on some sleep or overworking ourselves (though doing either of those can certainly make it worse); it is present no matter what.

Fatigue makes simple tasks feel impossible

For me, when fatigue sets in, it feels like my entire body is weighed down. Like I’m submerged in an invisible layer of quicksand that makes every move extremely arduous. The simplest of tasks becomes incredibly difficult. I could be lying on the couch and just trying to reach for the remote control can seem like a near-impossible task. That’s something that I don’t think people understand. It’s not just that I’m too exhausted to go do something, I’m too exhausted to do anything. Simple tasks like taking a drink of water or going to the bathroom become astonishingly difficult for me.

Expending all our energy

A common meme on the internet proclaims that people with multiple sclerosis expend 5 times as much energy as a normal person. While I haven’t seen a reference to any science behind that, it’s still a great way of explaining what fatigue feels like to us. It takes so much for us to do something that others might take for granted. If you have or know someone with MS, then you’ve no doubt heard about the Spoon Theory, another great description of what it’s like to live with MS that speaks specifically about fatigue.

No amount of sleep or rest helps

No amount of sleep or rest will help my fatigue. Maybe all I can do is sleep or rest, but that doesn’t mean that more of that will fix the problem. Remember, MS-related fatigue isn’t caused by something I’ve done, it’s caused by damage to my nerves and brain.

Fatigue is something I encounter at some point every day of my life. Sometimes that means I will wake up fatigued, making it hard to get out of bed and start my day. Many times it will hit me in the afternoon. It can last all day or for a few hours.

Fatigue is unpredictable

It can come on suddenly, which means I may have to cancel plans on short notice. Physically, in addition to feeling weighed down, my body becomes weak and tingly. That weakness leads to falls and also dropping things. While fatigue can happen to me almost randomly, some things are guaranteed to bring it on, like a change in temperature or stress. Fatigue is not just a physical issue, it makes my cognitive problems worse too. The fogginess, the confusion, the memory lapses that I experience because of MS all increase if I am dealing with fatigue.

An invisible symptom

Fatigue is one of those invisible symptoms we deal with, which means many of us have to deal with people, including friends and family, believing that it’s not a real issue. This leads to other problems like depression and loneliness. When we do mention it, we unfortunately often have to hear others say something along the lines of, “Oh, yeah, I’m tired, too, I understand”. I’m sorry, but you don’t. You have a choice in being tired; we don’t. There is perhaps no more infuriating of a situation than this one: when you discuss your fatigue and someone else says they are tired. Again, it’s not the same thing. I’ve been tired before I had MS and trust me, it’s different. The exhaustion I felt after running a marathon could not even compare to what MS-related fatigue feels like.

Difficulty making it through a workday

MS-related fatigue is a big reason why many people suffering from it end up leaving their job or why their performance begins to suffer. According to the National MS Society, fatigue is a big culprit when it comes to people with MS having to leave work.¹

It's absolutely demoralizing

An example of an all-too-common fatigue scenario for me is waking up with some big plans (for me, let’s say that means trying to clean the kitchen, maybe even just emptying and loading the dishwasher) and then being completely unable to do it. To have zero energy to be able to do anything and have to just lay there. It’s absolutely demoralizing to me and it happens at the very least once a week, often more. Having fatigue feels like having your life stolen from you, but you are still awake to see it go by without being able to partake in it. MS-related fatigue makes me a prisoner in my own body.

 

Advances in MS Treatment

  New treatments for MS are coming online all the time. Some are approved by the FDA, while others are still in clinical trials. See how they may help treat your symptoms.

 

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. 

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.

 

From: WebMD