MS news notes: Bowel symptoms, MS blood test, diet study
Columnist Ed Tobias comments on the week's top MS news
Note: This column was updated Sept. 12, 2023, to correct that Octave’s MSDA blood test is currently available and in use throughout the U.S.
Welcome to “MS News Notes,” a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening:
MS patients hesitant to discuss bowel problems with doctors
Who wants to talk about bowel issues with neurologists? Not many of us, according to a study reported in the MS News Today story “Bowel problems often unreported by MS patients to their doctors.”
The study says about two-thirds of people with MS have bowel symptoms, such as constipation or diarrhea, but keep silent about them even though they impact their quality of life. The study mentions pain and discomfort, but I’ll add another issue that has happened to me: A full colon can put pressure on the bladder, resulting in urinary frequency and urgency.
The researchers in this study report that some patients consider the subject stigmatizing, and healthcare professionals aren’t usually proactive about diagnosing bowel symptoms. But the study suggests a solution: a self-reported questionnaire about neurogenic bowel dysfunction. It could screen patients for bowel symptoms without the need for them to talk about it.
What do you think? Have you talked about bowel problems with your neurologist? Would you be more comfortable filling out a questionnaire?
Using a blood test and AI to measure disease activity
Another tool has joined the arsenal of MS tests, this one measuring disease progression, monitoring disease activity, and tracking responses to treatment.
“Octave’s blood test accurately captures MS disease activity: Study” looks at a blood test that reviews protein levels and then uses artificial intelligence algorithms to help measure the level of new disease activity.
The MS disease activity (MSDA) blood test, according to the story, reports that “people with moderate to high MSDA scores were more than four times as likely to have at least one inflamed lesion, compared to those with low scores. … Patients with a high MSDA score were more than 20 times as likely to have two or more such lesions.”
This looks like a test that could provide important information to neurologists, especially in assessing how well a disease-modifying therapy (DMT) is working for a patient.
Diet plus supplements may improve some progressive MS symptoms
The story “Anti-inflammatory diet, synbiotics ease progressive MS symptoms” reports on a small study involving only 69 people, 77% of whom are women. I’m highlighting it because, according to these researchers, other studies have failed to look at the combined effects of diet plus supplements on people with progressive forms of MS.
In this study, some participants received daily synbiotic supplements (a mixture of probiotics and prebiotics) along with a diet that was anti-inflammatory and antioxidant rich, with 55% carbohydrates, 15% protein, and 30% fats, most of which came from olive oil, fish, and vegetables. A control group ate their usual diet plus a placebo supplement. This lasted for four months. All of the test subjects continued their usual DMTs and received guidance from a dietitian.
The group that received the supplements plus the anti-inflammatory diet reported significant reductions in fatigue and pain, as well as improved bladder control, bowel control, and sexual function compared with baseline (the start of the study). The group using a regular diet plus placebo reported that symptoms sometimes worsened.
The improvement is encouraging for the people with MS who have the ability to start and stick with a diet as strict as this one. But I’m not among them. Are you?
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Richard Hagan
Because of my MS I have had to deal with bowel and urinary problems for years. I deal every day with these problems. I have a colostomy and self cath daily. I take a tablespoon full of Sorbitol every other day to help get my bowel moving. I am a 100% service connected veteran and I’m seen at the Palo Alto VA in CA. My care is A+++ in Spinal Cord.
Rich
Ed Tobias
Thanks for sharing that info, Richard. I'm glad the care at Palo Alto VA is top-notch and thanks for your service.
Ed
Pat Meints
How can I get this med for digestive problems?
Ed Tobias
Hi Pat,
If you're talking about symbioitic supplements, you can probably find them in a health food store. But, I'd suggest you discuss this with your doctor before you jump into using them.
Ed
Tom A
Hello Ed: “I’m not among them. Are you?”
Diet is: dinner- 6 days mashed sweet potatoes, good helping vegs (been pole beans all summer), and either chicken no skin, or salmon (add 2 tsp margarine)
Lunch: ½ egg salad sandwich, Swiss chard soup/stew (again, from garden)
Breakfast- cup oatmeal
Saturday is “special day”, most rules are off.
No salt, no sugar or added sugar, sugar free cookies. (I had been pre-diabetic for a short stint. Got rid of that)
600 MG R-Alpha Lipoic Acid x2 daily (concurrent with ongoing phase 2/3 trial)
Cup or two of skim milk, couple cups coffee with half/half and aspartame.
This has been consistent at least 10 years. Meals prepared in advance to make things simpler. 65 now, Betaseron 23 years and Ocrevus 2 years, then COVID, now nothing. Cane for stability on rough surfaces (bum leg 4 diagnoses on that ???, MS origin I suppose). Compounded MS + “old man” bladder issues, manageable. Otherwise, seem to be holding my own. How this stacks up to the diet you describe? I don’t know.
Do I feel like a spring chicken? No. I feel like a guy with MS for 35 years who has avoided the worst. Hiking, Mountain climbing, Jogging? You’ve got to be kidding! Gardening and “antiquing” I can do.
Ed Tobias
Hi Tom,
Thanks for sharing all that. The diet described in the study reported on in the study used a diet similar to the Mediterranean, which is similar to what you've been doing, I think. It's great that you've been so successful with it. I guess I'm weak when it comes to food. I love my mean and ice cream, although my wife and I have been using Factor meals, which are shipped to us, for four dinners each week. It's a lot better than the processed/frozen foods that I used to eat a lot. I also exercise on weight machines and do a lot of swimming to "keep on ticking" at age 75 (43 of them with MS).
Good luck,
Ed
Patricia P. Garrett
I am glad that this concern has been voiced. I have had many embarrassing accidents. I have watched my diet and done a process of elimination which seems to help. Chocolate seems to be a culprit. I would like to see if any others are bothered and which foods.
Ed Tobias
Hi Patrica,
Thanks for your comment. So sorry chocolate was the culprit. I couldn't live without it.
Ed
Sue s
I was diagnosed with MS when I was 66 and am now 72 and was told I have either primary or secondary MS. I presently am struggling with constipation. I asked my neurologist what I can do and his answer was to ask my PCP. I did, but his answer was confusing. First he told me to take a laxative every morning. Next, he told me to try amitza or linzzes. I did but the problems made it impossible to go my PT sessions twice a week. Now he conveniently "forgets" to ask me how it is going. It seems like nobody wants to talk about it. So I am left to find my own solutions.
Ed Tobias
Hi Sue,
It's strange that you would be told that you have either primary or secondary MS. Primary is a diagnosis that is generally given to someone with a steady disease progression from from the start while secondary is usually the label following a diagnosis when the symptoms are relapsing but change to a steady progression without exacerbations.
As for your constipation, if you search "constipation" on this website you'll see a number of stories that have been written about handling that problem.
Hope that helps,
Ed
Katherine A Minden
Holigos resolves the gut problems about 90% of the time for me. I also eat the same anti-inflammatory diet every day. I am working with electric stim shorts to modify bladder issues. They work for over 85% of those who try them, and quickly!