Apple Podcasts 
Spotify Aug. 17, 2026
Episode 468: You've Been Given a 15% Chance of Living and Your Spouse Gets Diagnosed with MS with Kathleen Silva
Key Takeaways
- Kathleen Silva shared her harrowing experience of being diagnosed with stage IV colon cancer with a 15% chance of survival shortly before her husband, Rick, was diagnosed with multiple sclerosis.
- Privosector is an investigational intravenous therapy that aims to provide direct neuroprotection during acute MS relapses by shielding delicate nerve axons from permanent destruction.
- A large survey from the NARCOMs registry revealed that while 40% of MS patients met the clinical criteria for GLP-1 medications like Ozempic, only 7.4% reported using them.
- A German cohort study demonstrated that cigarette smoking significantly accelerates physical disability and walking impairment in people living with MS, highlighting the importance of quitting.
- An analysis of U.S. death certificates showed that MS-related mortality rates increased between 2012 and 2023, with cardiovascular comorbidities like hypertension playing a critical role.
Imagine your spouse or significant other has been diagnosed with MS...shortly after you were diagnosed with stage IV colon cancer, and given just a 15% chance of survival. All of a sudden, the roles of patient and care partner are up for grabs -- and they change with almost daily frequency.
That's exactly the scenario my guest, Kathleen Silva, faced. Kathleen is joining me to discuss how she and her husband, Rick, survived and thrived amid that frightening chaos. (Spoiler alert -- no one died!)
We'll also tell you about an investigational drug that's the first to promise neuroprotection during an MS relapse.
We're sharing study results that show people with MS who meet the medical criteria aren't jumping on the GLP-1 bandwagon.
We'll provide compelling evidence for anyone with MS to quit smoking.
And we're breaking down the results of a study that analyzed mortality rates in cases where MS was listed as the underlying cause of death.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: When the roles of patient and care partner get turned upside down and inside out :22
The FDA green lights clinical trials for an investigational drug that promises neuroprotection during an MS relapse 1:08
People living with MS who meet the medical criteria aren't jumping on the GLP-1 bandwagon 5:43
Study results provide startling evidence for quitting smoking if you're living with MS 8:34
In spite of highly effective DMTs, mortality rates for deaths in which MS is listed as the underlying cause are increasing 14:05
Kathleen Silva takes us through the harrowing time in her life when her husband, Rick, was diagnosed with MS shortly after she had been diagnosed with Stage 4 colon cancer and given just a 15% chance of surviving 19:23
Share this episode 35:12
Next week 36:31
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
STUDY: Use of Semaglutide and Tirzepatide Among People with Multiple Sclerosis
https://journals.sagepub.com/doi/10.1177/13524585261442033
STUDY: Impact of Tobacco and Alcohol Consumption on Disease Progression and MRI In People With Multiple Sclerosis: Results of the Prospective Cohort Study NationMS
https://journals.sagepub.com/doi/10.1177/17562864261464304
STUDY: Racial and Ethnic Trends and Comorbidity Patterns in Multiple Sclerosis Mortality
https://www.neurology.org/doi/10.1212/WN9.0000000000000148
REGISTER: ECTRIMS Patient Community Day
https://ectrimspatientcommunity.eu
JOIN: The RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review
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RealTalk MS Episode 468
Guest: Kathleen Silva
Frequently Asked Questions
What is the focus of Kathleen Silva's interview on RealTalk MS?
Kathleen discusses how she and her husband, Rick, navigated the frightening chaos of being diagnosed with stage IV colon cancer and multiple sclerosis almost simultaneously.
What is Privosector in the context of MS treatment?
Privosector is an investigational therapy currently moving into clinical trials that is designed to provide direct neuroprotection during an acute MS relapse to prevent permanent axon loss.
How does cigarette smoking impact people with multiple sclerosis?
Research shows that smoking accelerates physical decline and increases the odds of reaching moderate disability and mobility impairment sooner among individuals living with MS.
Why are mortality rates increasing where MS is listed as the underlying cause?
Recent studies suggest that rising mortality rates are heavily influenced by co-occurring health conditions, particularly cardiovascular risk factors like high blood pressure and cardiac events.
WEBVTT
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It's August 18th, and we have a lot to talk about.
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Imagine your spouse or significant other has been diagnosed with MS.
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Shortly after, you were diagnosed with stage 4 colon cancer and given just a 15% chance of survival.
00:00:35.640 --> 00:00:39.660
All of a sudden, the roles of patient and care partner are up for grabs,
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and they change with almost daily frequency.
00:00:43.220 --> 00:00:47.160
Well, that's exactly the scenario my guest Kathleen Silva faced.
00:00:47.480 --> 00:00:52.080
And Kathleen is joining me to discuss how she and her husband Rick survived
00:00:52.080 --> 00:00:55.730
and even thrived amidst all of that frightening chaos.
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And spoiler alert, no one died.
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But before we meet Kathleen, there are a few other things that you should know about.
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There's a major blind spot in how MS relapses are treated, and the good news
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is there's an experimental therapy that's aiming to change that treatment paradigm.
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If you live with relapsing-remitting MS, then you know the drill when a bad relapse hits.
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Severe symptoms emerge, whether that's sudden vision loss from optic neuritis,
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extreme weakness, or balance issues.
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And the standard medical response is almost always a heavy course of high-dose corticosteroids.
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Now, steroids do an important job. They act like a fire extinguisher for acute inflammation.
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But here's the important detail that often gets left out of the conversation.
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Steroids don't protect nerve fibers from being permanently destroyed during a relapse.
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That's why so many people find that even after a relapse resolves,
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recovery is incomplete, often leaving them with lingering symptoms and worsening disability.
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Privosector is an investigational therapy that's been given the green light
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by the FDA to expand into clinical trials for acute MS relapses with a completely
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different approach, direct neuroprotection.
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To understand why this is a big deal, we need to look at what actually happens
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inside the central nervous system during an acute relapse.
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When the immune system flares up, it doesn't just strip away the protective myelin coating.
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The toxic environment created by that inflammation directly attacks the axons,
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the long, delicate electrical wires that connect your brain cells,
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and once an axon degenerates, that nerve signal is lost.
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Current disease-modifying therapies do an outstanding job of lowering the frequency of relapses.
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Steroids shorten how long the acute inflammation lasts, but neither treatment
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protects that naked axon while it's under attack.
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This is where Privosector comes in.
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Privosector is an intravenous therapy designed not as an immune suppressant,
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but as a neuroprotective shield.
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Instead of targeting the immune system, it works directly at the cellular level
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to help nerve cells and their axons survive the toxic stress of an acute MS relapse.
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Privosector has already been evaluated in phase 2 clinical trials and is currently
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in phase 3 trials as a treatment for acute optic neuritis.
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Now that's inflammation of the optic nerve that causes sudden vision loss,
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which, by the way, is often one of the earliest and clearest symptoms in an MS relapse.
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The proposed regimen for privosector is an intravenous infusion given once daily
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for five days during that acute relapse window, which is similar to the time
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frame used for steroid treatment.
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The primary goal of the clinical trial will be to assess an individual's recovery
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as early as three months after an acute relapse,
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measuring whether preserving axons during the attack leads to better functional
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recovery and less lingering disability.
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Now, privosector isn't meant to replace your disease-modifying therapy.
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It's being developed as an acute intervention to deploy when an attack happens,
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designed to stop permanent nerve loss before it sets in. And that's the paradigm shift.
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The reality of an MS relapse is that the neurodegeneration that occurs persists
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long after the inflammation has settled down.
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And over a period of years, that neurodegeneration is driving the silent accumulation of disability.
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While there are more than 20 DMTs available to reduce the frequency of relapses,
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there are no neuroprotective therapies to preserve nerve tissue when a relapse does occur.
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Privosector is still an investigational drug, and it will need to prove in clinical
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trials that protecting axons during a relapse translates to tangible,
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long-term functional recovery for patients.
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But the shift in research focus from simply calming inflammation to actively
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shielding nerve fibers is exactly where acute MS care needs to go.
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This clinical trial will get
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underway next year, and we'll be watching closely as the data develops.
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You know them by names like Ozempic, Wegovi, Zepbound, and Monjaro.
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These popular GLP receptor agonists appear to be the wonder drugs of the 21st century.
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In addition to managing diabetes and promoting weight loss, researchers are
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finding that these drugs are also effective in reducing the risk of heart attack,
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reducing high blood pressure,
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protecting against chronic kidney disease, improving fatty liver disease,
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reducing addictive behavior, and potentially mitigating cognitive decline.
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Yet most people living with MS who meet the FDA-approved criteria for these
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medications aren't using them.
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Now, as of today, these drugs are approved for managing diabetes and promoting weight loss.
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Yet, the results of a large survey conducted through the NARCOM's registry reveal
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a massive gap between who in the MS community qualifies for these medications
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and who's actually receiving them.
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Researchers analyzed data from 4,181 survey participants to see how many met
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the clinical criteria for GLP-1 therapy and how many had ever taken these drugs.
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And they found that a full 40% of the survey respondents met FDA-approved indications
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for GLP-1 drugs like Ozempic and Manjaro, primarily based on their body mass
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index and other related health conditions.
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Yet, only 7.4% of the survey participants reported ever actually using one of these medications.
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That means the vast majority of people with MS who meet standard medical criteria
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for a GLP-1 prescription are not on these treatments.
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And that should be concerning for our community.
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First, metabolic health and other vascular health conditions are known to influence
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long-term MS disease course and individual mobility.
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When conditions that qualify someone for GLP-1 therapy go unaddressed,
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it puts extra strain on their overall neurological health.
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Second, it highlights ongoing real-world barriers that might include insurance
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hurdles, coverage denials, out-of-pocket costs, and discussions that simply
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aren't happening during routine neurology appointments.
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So this is where you get to be your own healthcare advocate.
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It. If you have questions about whether managing your metabolic health or exploring
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GLP-1 therapies fits into your broader care plan, you're the one that needs
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to bring it up with your health care team.
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Now, if you'd like to review the details of this study, you'll find that link in today's show notes.
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While disease-modifying therapies do the heavy lifting and managing multiple
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sclerosis, the everyday choices we make are lifestyle habits.
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Well, they can play a measurable role in how the disease unfolds.
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That's why, especially when it comes to the unpredictable nature of MS,
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I think it's important for us to talk about the power of knowing what you can control.
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In a study from Germany, researchers followed 1,374 adults diagnosed with either
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clinically isolated syndrome or relapsing-remitting MS
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for up to six years across 22 study centers in Germany.
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Now, none of these participants had started any MS treatment when they enrolled
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in the study, which provided the researchers a clean baseline to track how two
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specific habits, cigarette smoking and alcohol consumption,
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impact physical disability, walking speed, cognitive sharpness,
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and MRI lesion activity over time.
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So let's break down what the numbers showed and what they mean in practical terms.
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When it came to smoking tobacco, about 32% of the participants reported smoking
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at the start of the study.
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The researchers tracked whether the smokers were more likely to reach key disability
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thresholds during the six-year follow-up,
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and they found that smokers across all categories, that is light smokers,
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moderate smokers, and heavy smokers,
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they all showed increased odds of reaching an EDSS score of 3,
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which marks the shift into moderate disability.
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For light smokers, that risk was significantly higher, with an 80% increase
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in the odds compared to non-smokers.
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So if you smoke if you're a light smoker, please take a minute to let that sink in.
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When it came to walking speed, the study used a six-second threshold on the
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timed 25-foot walk test as a benchmark for meaningful mobility decline.
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Light smokers faced an 85% increase in the odds of hitting that slower walking
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threshold compared to non-smokers.
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And when they analyzed differences in cognitive function, changes in processing
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speed and memory were less consistent across the participant groups.
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They showed no clear statistical pattern.
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But there was a critical nuance in the MRI data.
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Smoking did not significantly correlate with higher numbers of new T2 lesions
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or active gadolinium-enhancing lesions.
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This suggests that smoking's harmful impact in MS may be driven by ongoing direct
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neurodegeneration and nerve damage rather than acute visible inflammation. information.
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Now, the study also evaluated alcohol use, categorizing about 27% of the study
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participants as non-drinkers, 68% as occasional drinkers, and about 4% as regular drinkers.
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And at first glance, the statistics showed that occasional drinkers had lower
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odds of reaching the disability cutoffs for EDSS, walking speed,
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and cognitive decline compared to non-drinkers.
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But before you take that as a reason to start drinking, the researchers explicitly
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emphasized a very important concept in epidemiology called reverse causation.
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That means alcohol isn't necessarily protecting the brain.
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Instead, people who feel physically better and have milder symptoms are probably
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more likely to participate in social drinking.
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Meanwhile, people experiencing greater disability, fatigue, or medication side
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effects, well, they often cut back or stop drinking altogether.
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But the authors were very clear. This data does not support using alcohol as
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an anti-inflammatory strategy, and any potential association has to be weighed
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against the known health risks of alcohol.
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So what are the clear takeaways from following these 1,374 study participants for over six years.
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First, smoking accelerates physical decline among people living with MS.
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Smoking is directly linked to reaching moderate physical disability and walking impairment sooner.
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If you smoke, quitting is one of the single most impactful, proactive steps
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you can take to protect your mobility.
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Second, lesions don't tell the whole story.
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The lack of new MRI lesions among smokers reminds us that silent nerve damage
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can happen under the surface even when standard inflammation markers look stable,
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a condition now known as progression independent of relapse activity, or PIRA.
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And finally, don't misinterpret the alcohol findings.
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The apparent protective trend with alcohol is most likely a reflection of who
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feels well enough to drink. It's not a medical benefit.
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If you're looking for resources or support to help you quit smoking,
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talk directly with your neurologist or primary care team.
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There are evidence-based programs that are designed to help you.
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And if you'd like to review the details of this study, well,
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you'll find that link in today's show notes.
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Over the last couple of decades, the explosion of disease-modifying therapies
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has fundamentally transformed what it means to manage MS.
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But managing MS effectively means looking beyond relapse rates and brain lesions
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to address the whole person, including those underlying health conditions that
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directly impact an individual's long-term survival.
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A major new study published in the journal Neurology analyzed more than 42,000
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U.S. death certificates from 2012 to 2023, where multiple sclerosis was listed
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as the underlying cause of death.
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So let's take a moment to clarify what that means.
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Just like HIV or AIDS, no one dies from MS.
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However, people do pass away from other health conditions due to having MS,
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and in those cases, MS is considered the underlying cause of death.
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Led by Dr. Liliana Amesqua from the Keck School of Medicine of USC,
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alongside collaborators from the University of Kentucky and the University of
00:15:10.970 --> 00:15:16.270
Virginia, this research provides a sober, necessary look at mortality trends,
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racial disparities, and the growing importance of cardiovascular health in MS.
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Analyzing 42,205 records from a CDC database, the research team found that even
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when adjusting for age groups, MS-related death rates increased over the 12-year
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period that was analyzed.
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And as Dr. Amesco has noted, while we might expect treatment advances to flatten
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these trends, the persistence of rising death rates shows there's still critical work to do,
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especially around co-occurring illnesses called comorbidities.
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This analysis also showed black individuals had the highest MS-related death
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rates, followed by white individuals.
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Black patients with MS died younger, with mortality rates peaking between the ages of 65 and 74.
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For white patients, death rates peaked a decade later, between the ages of 75 and 84.
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And in the Hispanic MS population, death rates rose among female patients between the ages of 45 and 84.
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The highest mortality rates were concentrated in northern and midwestern states,
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including Wyoming, Oregon, Utah, Nebraska, Kansas, Minnesota,
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Michigan, New Hampshire, and Maine, pointing to potential differences in demographics,
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healthcare access, and regional prevalence of MS.
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Perhaps the most actionable finding in this entire paper is the role of co-occurring
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conditions, particularly cardiovascular health.
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MS-related deaths involving hypertension increased between 2019 and 2023 among
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both white and black patients, and deaths involving cardiac arrest also rose between 2019 and 2022,
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impacting black patients most heavily.
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High blood pressure and vascular disease don't just damage the heart.
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They cause microvascular brain changes that can accelerate neurodegeneration.
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Further complicating things, cardiovascular damage can mimic MS lesions on an
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MRI scan, contributing to diagnostic delays,
00:17:29.600 --> 00:17:34.350
especially when previous research shows patients from racial and ethnic minority
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groups can already wait up to a decade longer for an accurate MS diagnosis.
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The major takeaway from this research is that MS care can't exist in a silo.
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High blood pressure, cholesterol, and cardiac risk factors are treatable and often preventable.
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And managing your cardiovascular health with your primary care provider is just
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as vital to protecting your brain and extending your life as choosing the right
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disease-modifying therapy with your neurologist.
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Now, it's worth noting that because it relied on death certificates,
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researchers couldn't track specific MS treatments, disease severity,
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or healthcare access directly.
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And COVID-19 likely influenced the mortality rates in the later years of the study.
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But the broad takeaway remains clear. Neurological health really means whole body health.
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Now, if you'd like to review the details of this study, you'll find that link in today's show notes.
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And while we're on the uncomfortable subject of life and death,
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consider this scenario for a moment.
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You've been diagnosed with stage 4 colon cancer and given a 15% chance of survival.
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While you and your spouse are trying to wrap your heads around that,
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your spouse is diagnosed with MS.
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And because your spouse is a male, it's likely that his disease trajectory could be difficult.
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That's the situation Kathleen and Rick Silva found themselves in.
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And in a moment, my guest Kathleen Silva will walk us through what that time
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was like, how she and Rick each took on the roles of patient and care partners
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simultaneously, and what it was that kept them both emotionally afloat.
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Imagine your significant other or spouse has been diagnosed with MS shortly
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after you've been diagnosed with stage 4 colon cancer.
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All of a sudden, your role as a care partner just got very complicated.
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That's exactly the scenario my guest Kathleen Silva faced. Welcome to the podcast, Kathleen.
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Well, thank you, Jon. I'm excited to be here.
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Your husband, Rick, was the spouse in question here who was diagnosed with MS,
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And when you and Rick received these diagnoses so close together,
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the traditional roles of patient
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and caregiver, well, they were completely rewritten for both of you.
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In those early days, how did you even begin to parse out who needed what and when?
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Well, that was not real hard because Rick's at that point was more emotional,
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emotionally devastating. Mine was physically devastating. So initially, I took the care.
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