Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
Available on Amazon and www.marynickum.com
Showing posts with label brain. Show all posts
Showing posts with label brain. Show all posts

Thursday, July 10, 2025

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.

 

 

Tuesday, May 28, 2024

MS Trial Alert: Investigators Recruiting People with Relapsing-Remitting Multiple Sclerosis for Study Adding a Potential Myelin Repair Therapy to Disease-Modifying Therapy

 Summary: Researchers at 25 sites across the United States are recruiting 168 people with relapsing-remitting multiple sclerosis for a study determining the safety and potential effectiveness of adding to disease-modifying therapy the experimental, oral therapy that may promote the repair of nerve-insulating myelin (PIPE-307). The study is sponsored by Contineum Therapeutics.Details:Background: PIPE-307 is a molecule that inhibits the muscarinic type 1 (M1) receptor. The M1 receptor is a molecule in the brain that is known to prevent the development of cells that make myelin, the insulation of nerve fibers that is damaged in MS, and the formation of myelin itself. This study will test whether adding PIPE-307 to approved disease-modifying therapies is safe and potentially effective.Eligibility: Participants should be 18 to 50 years old with a diagnosis of relapsing-remitting MS. They should have been on any MS disease-modifying therapy for six months.Participants will be randomly assigned to receive one of two doses of PIPE-307 or inactive placebo, once daily by mouth, for 26 weeks. Subjects may remain on their existing disease modifying therapy. The primary outcomes being measured are the number of people with adverse events and vision acuity (an indication of the health of the optic nerve and vision pathways in the brain). Secondary outcomes include measures of disability progression and disease activity on MRI scans.The study will include routine blood draws, neurological assessments, MRI scans, and a remote sensor worn on the ankles to assess walking (for those subjects who agree to wear the device for short intervals during the study). People will undergo a series of screening assessments to determine eligibility, and then return to the site for follow-up testing at multiple times during the treatment period.Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please contact the site nearest you:
 
ARIZONA
Megan HamiltonXenoscience, Inc.2601 N 3rd Street Suite 125Phoenix, AZ 85004602 274 9500SFLITMAN@XENOSCIENCE.COMMadison Turner, Ashely MitchellArizona Neuroscience Research, LLC3805 E Bell Rd. Suite 2400, Phoenix, AZ 85032480-210-8723madison@centerforneurologyandspine.com
ashely@centerforneurologyandspine.comCALIFORNIACasey Holden, RNREDI (Sutter Health)2850 Telegraph Avenue, Suite 110, Berkeley, CA 94705510-204-1610casey.holden@sutterhealth.orgCOLORADODevon GlazeColorado Springs Neurological Associates2312 N. Nevada Ave Suite 300Colorado Springs, CO 80907719-389-1126dglaze@csneuro.comFLORIDAKelly CalistriAqualane Clinical Research3200 Bailey Lane, Suite 180, Naples, FL 34105239-529-6780kelly@aqualaneresearch.comJodi MummertMS & Neuromuscular Center of Excellence3190 N McMullen Booth Road Suite 200, Clearwater, FL 33761(813) 431-4913jodi@gulfcoastcta.comClellia BergaminoVero Beach Neurology and Research Institute1040 37th Place Suite #201 Vero Beach FL 32960772-4492-7051 or 772-299-4304cbergamino@geodysseyrsch.comNicole DavisARS Brain and Spine1211 Dunlawton Ave. Port Orange, Fl. 32168386.204.0960 ext 632Nicole.davis@accelclinical.comGEORGIACarlyn R. Kappy, RD, LD, CCRPShepherd Center2020 Peachtree Road, NWAtlanta, GA 30309404-367-1375carlyn.kappy@shepherd.orgAndrea LevinVelocity Clinical Research6602 Waters Ave., Bldg C Savannah GA 31406912-790-4837alevin@velocityclinical.comINDIANASarah CollinsIndiana University School of Medicine Department of Neurology355 W. 16th Street, Suite 4700Indianapolis, IN 46202317-963-7315SQCollin@IU.eduKANSASLisa Schmidt, LPNUniversity of Kansas Medical Center3901 Rainbow Blvd, MS 2012, Kansas City, KS 66160913-588-3968lschmidt@kumc.eduMASSACHUSETTSJillian PellegriniNeurology Center of New England P.C.9 Payson Road, Suite 100, Foxboro, MA, 02035781-551-5812 opt 6jpellegrini@myneurodr.comMISSOURIAmber T. Smith, BS, MAWashington University School of MedicineDepartment of Neurology - John L. Trotter MS Center660 South Euclid Ave Campus Box 8111St. Louis MO, 63110314-362-3493 (p)ambertsmith@wustl.eduNEW MEXICOEmily Reese and Andrea RodriguezMS Specialty Clinic at the University of New Mexico's Health Sciences CenterNeurology Department MS Specialty Clinic
915 Camino de Salud NE, Albuquerque, NM 87131
(505) 272-0959EjReese@salud.unm.eduandreRodriguez@salud.unm.eduNEW YORKAllison EmborskyDent Neurologic Institute3980 Sheridan Dr Amherst NY 14226716-558-3543
aemborsky@dentinstitute.comOKLAHOMAMicki DrakeOMRF Multiple Sclerosis Center of Excellence820 NE 15th St., Oklahoma City, OK 73104405.271.6242Micki-Drake@omrf.orgTENNESSEEKim PuccioSibyl Wray, MD Neurology, PC dba Hope Neurology2060 Lakeside Centre Way Knoxville, TN 37922865-299-5564kpuccio@hopeneuro.comTEXASZenaida HernandezBhupesh Dihenia MD PA3815 23rd Street, Lubbock, TX 79410 USA806-368-9415researchbhd@gmail.comElizabeth MartinezUniversity of Texas Health Science Center at Houston6410 Fannin, Ste 1014Houston, TX 77030(713) 704-4137elizabeth.martinez@uth.tmc.eduFahim DayaniClinical Trial Network713-484-6947fdayani@ctntexas.comWASHINGTONElisa McGeeUniversity of WashingtonMcMurray Building NWH campus, 1536 N 115th Street, Seattle, WA 98133206-598-9260emcgee@uw.eduAmelia JohnsonVirginia Mason Medical Center1100 9th Avenue Seattle, WA 98101(206) 287-6260amelia.johnson900@vmfh.orgTonya StiggerMultiCare Institute for Research & Innovation (MIRI)915 6th Ave. Suite #101, Tacoma, WA 98405253-403-1208Tonya.Stigger@multicare.orgDownload a brochure that discusses issues to think about when considering enrolling in an MS clinical trial (PDF)
 
Without participants in research studies, MS research would come to a standstill. 
Read more here.

Friday, June 17, 2022

Multiple Sclerosis (MS): Early Signs and Common Symptoms

 


Multiple Sclerosis (MS): Early Signs and Common Symptoms

Medically Reviewed by Carol DerSarkissian, MD on September 26, 2020

People with multiple sclerosis (MS) tend to have their first symptoms between the ages of 20 and 40. Usually the symptoms get better, but then they come back. Some come and go, while others linger.

No two people have exactly the same symptoms. You may have a single symptom, and then go months or years without any others. A problem can also happen just one time, go away, and never return. For some people, the symptoms get worse within weeks or months.

Early Signs of MS

  • For many people, the first brush with what’s later diagnosed as MS is what doctors call clinically isolated syndrome (CIS). This episode of neurological symptoms usually lasts 24 hours. It happens when your immune system mistakenly tells your body to attack myelin, the protective sheath over nerve cells in your brain and spine. You may hear your doctor call this demyelination. It causes scars, or lesions, that make it harder for signals to travel between your brain and your body. Monofocal episode: You have one symptom.
  • Multifocal episode: You have more than one symptom.

The most common symptoms in CIS are:

Optic neuritis: This condition damages the nerve that connects your eye to your brain. It usually affects just one eye, but in rare cases, it involves both. You might notice:

  • Blurry vision
  • Colors appear dull
  • Pain in your eye, especially when you move it

Numbness & Tingling: It usually affects your legs. You might feel:

  • An electric shock-like feeling when you move your head or neck. It may travel down your spine or into your arms or legs.
  • Numbness, often in your face
  • Tingling

Not everyone who has CIS will get MS. The odds are higher if you have lesions in your brain from loss of myelin. If you have another CIS or other MS symptoms later, your doctor will do a test called an MRI that takes a picture of your brain to look for them. Learn more about the differences between CIS and MS.

Primary MS Symptoms

These come from ongoing damage to your myelin. They aren’t pleasant, but your MS treatment team can help you keep most of them under control with medication, rehabilitation, and other tactics. The most common symptoms are:

Bladder and bowel problems: You may have to pee more often, need to go at night, or have trouble emptying your bladder fully. Bowel issues like constipation are also common. Read more on bladder control problems and bowel problems with MS.

Clumsiness or lack of coordination: MS can make it hard to get around. You might have:

  • Trouble walking
  • A hard time keeping your balance
  • Changes in your gait

View a slideshow on what your walk says about you.

Dizziness: You may feel lightheaded. You may also have vertigo, that feeling that the room is spinning. Know the causes of dizziness and vertigo with MS.

Emotional changes and depression: It’s tough to adjust to the idea that you have a chronic disease, let alone one that’s hard to predict and that will take a physical toll. Fear of the unknown can make you anxious. Plus the disease damages nerve fibers in your brain, and that can affect your emotions. So can medications, like corticosteroids, used to treat MS. Get more information on how to manage depression with MS.

Eye problems: In addition to the optic neuritis that comes with CIS, MS can cause:

  • Nystagmus: involuntary eye movements
  • Diplopia: double vision

Learn more about vision problems linked to MS.

Fatigue: You may feel very tired. It often comes on in the afternoon and causes weak muscles, slowed thinking, or sleepiness. It isn’t usually related to the amount of work you do. Some people with MS say they can feel tired even after a good night's sleep. Get tips on how to manage fatigue with MS.

Heat-related problems: You might notice them as you warm up during exercise. You could feel tired and weak or have trouble controlling certain body parts, like your foot or leg. As you rest and cool down, these symptoms are likely to go away. Know more on how to manage heat sensitivity with MS.

 

Muscle spasms: They usually affect your leg muscles. They’re an early symptom for almost half the people with MS. They also affect people with progressive MS. You might feel mild stiffness or strong, painful spasms. Read more on how to treat MS-related muscle spasms.

Sexual troubles: These include vaginal dryness in women and erection problems in men. Both men and women may be less responsive to touch, have a lower sex drive, or have trouble reaching orgasm. Learn more on how to maintain intimacy when you have MS.

Speech problems: MS could cause long pauses between your words and slurred or nasal speech. You might have swallowing problems as the disease advances. Get more information on symptoms of speech and swallowing problems with MS.

Thinking problems: It might be hard to focus from time to time. This will probably mean slowed thinking, poor attention, or fuzzy memory. Some people have severe problems that make it hard to do daily tasks, but that’s rare. MS doesn’t usually change your intellect or ability to read and understand conversation. Find out more on how MS affects the brain and cognition.

Tremors: About half of people with MS have them. They can be minor shakes or so intense it’s hard to do everyday activities. Read more about the types of tremors caused by MS.

Trouble walking: MS can cause muscle weakness or spasms, which make it tough to walk. Balance problems, numb feet, and fatigue can also happen. Learn more about mobility aids and assistive devices for MS.

Unusual sensations: In addition to the pins and needles sensation that’s part of CIS, you might also have severe itching, burning, stabbing, or tearing pains. You could feel a tightness around your ribs or upper belly known as the MS hug. Doctors call these uncomfortable symptoms dysesthesia. View a slideshow on unusual symptoms and sensations caused by MS.

Secondary Symptoms

These are problems created by your primary MS symptoms, not by damaged myelin.

  • Not being able to empty your bladder can lead to a bladder infection.
  • If you have trouble walking and are often fatigued, you’re likely to become less active. That can take a toll on your muscle tone, make your breathing shallow, and even affect your bone density.

Doctors can treat secondary symptoms, but the goal is to avoid them by treating the primary symptoms.

 

Tertiary Symptoms

These are the social, psychological, and job-related problems of life with MS.

  • If MS makes it hard for you to walk or drive, you may not be able to do your job well.
  • Because it’s tough to get around and hard to talk to people about what life with a chronic disease is like, you may not be as social as you once were.
  • You could get depressed. It’s a byproduct of the changes MS makes in your brain and in your life.

Because MS varies so much, it's best not to compare yourself with other people who have it. Your experience is likely to be different. Most people learn to manage their symptoms and can keep leading full, active lives.

 


 

Sunday, March 4, 2018

Zinbryta (daclizumab), a Therapy for Relapsing MS, is Withdrawn from Market



  • Biogen and AbbVie have announced the voluntary withdrawal Zinbryta ™ (daclizumab) from the worldwide market.
  • Zinbryta is an immune-modulating therapy that was approved in 2016 for people with relapsing MS and generally reserved for people who had an inadequate response to two or more MS therapies.
  • According to a company press release, the European Medicines Agency had raised new safety concerns related to reports of inflammation of the brain or its surrounding tissues (inflammatory encephalitis and meningoencephalitis) among people taking Zinbryta.
  • Individuals currently taking Zinbryta should contact their healthcare providers to determine alternative treatment options, and to continue safety monitoring. According to the medication guide, this would include monthly blood tests to monitor liver function for up to six months after the last dose.