Navigating Multiple Sclerosis with Author and Patient Brenda Snow

Introduction and Sponsor Message 0:00

Welcome to the Art of medicine, the program that explores the arts, business and clinical aspects of the practice of medicine. I'm your host, Doctor Andrew Wilner. I'll just take a second before we start. To thank the listeners and viewers who follow the art of medicine. It's been more than five years now, and over 140 episodes, and the audience continues to grow. So thanks very much. Also, I'm always interested in new ideas for the program, so if you have one, please press the feedback button on your phone and tell me what you think.

Thanks again. Today I'm pleased to welcome Brenda Snow. Brenda is the founder and CEO of Snow Companies. She's also a patient with multiple sclerosis. In just a moment, I'm going to let her tell her story. But first, a word from our sponsor. Locum story.com. Locum story.com is a free, unbiased educational resource about locum tenant. It's not an agency. Locum story answers your questions on their website, podcast, webinars, videos and they even have a locums 101 crash course. Learn about locums and get insights from real life physicians, Pas and NPS at Locum story.com.

And now to my guest welcome, Brenda Snow. Hello. And thank you for having me, Doctor Wilner. Yeah, it's a pleasure. Thanks so much for joining me. I know you have a story, and I thought rather than me tell it, it's a lot better to have you tell it. So where should we start? Why don't we start? I guess, with your diagnosis of multiple sclerosis. How did that happen? That's a good place to start, because it really was the impetus for everything else that followed. So you, being a neurologist, are going to, be acutely familiar with what was happening to me.

Brenda Snow's MS Symptoms and Misdiagnosis 2:06

And just in the few minutes we've spent together, it's too bad you weren't my doctor 30 years ago. Because let's just say out of the gate I had a bumpy ride, getting diagnosed. So which is is not uncommon. So you know it. Like I said, it was 30 years ago, and, I was a young, single mom, and I started to have a lot of strange things happen to me that I really didn't know what they were, and I sort of didn't pay attention to them. Unusual fatigue. And like, you know, that weird sort of a soft, sensitive spot for me because not fatigue, like being tired, like moving through cement, you just this overwhelming fatigue.

And I'm a very high energy person. So I'd never really experienced that. You know, my primary care doctor just said it's stress. Don't worry about it. And but very quickly things started to go downhill. My left foot started to feel very different. I people say, well, how did it feel? You know, when a limb falls asleep? Kind of like that. Not totally. But then it started like moving up my leg and I noticed that my gait had changed. I wasn't able to work my left leg and my left foot like the other one, and then it started to become an appendage that I was dragging.

And people started to notice, like, what's wrong? Do you have an injury? I said, I don't know, like, this is just, is it a pinched nerve? What is it? When again, back to my doctor and my doctor said it's probably, the fact that you had a cesarean section, and I was like, well, my daughter's five. Like, I know, like, I don't know that, right? It didn't sound right to me. And then things like losing total control of my bladder, you know, there's just all of a sudden sensation of urine running down my legs.

And I thought, okay, now this is really not normal. And then I started to have double vision and started seeing two of everything. And that was very alarming and very emotional. You know, I had two little girls standing at the foot of my bed, and I didn't know which one was the real one. And I, you know, but I knew she wasn't a twin. So at this point, you know, but again, prior to Google, prior to WebMD, prior to, I think it was a book from a library, and we had some friends of friends that said, do you think it could be multiple sclerosis?

You know, she's like the age. And so my parents sort of said something to me. So we decided to go see a neurologist. We really were like, you know, I need to get into neurologist. The first neurologist that I went to did an examination and said to me, I think you're suffering from migraine headaches. And I said, well, I didn't check this headache box. I don't have a headache. I wanted to say, you're kind of starting to give me a headache. But, so they said, you know, take the latest and greatest.

This is a new FDA approved drug for migraine. So I left there, and I like I didn't have a headache, so I didn't take it. And then I started not being able to really walk. And my dad was sort of carrying me into places. And then I couldn't see, I was, you know, had spotty, spotty vision, especially in my left eye, transient vision loss. And then I really knew, oh, you know, something's gone terribly wrong, and I don't know what it is. So everybody said, why don't you try this other neurologist? And at the time, I was living in the San Francisco Bay area, so I was at a very good academic institution and was really and I think that's the one thing that I would convey to your listeners who are I would think largely a lot of HCP is just never underestimate the importance of listening and really taking the time with patients.

You know, don't just see us as a disease or a case, like, I really needed somebody to see my humanity and really see who I was. And I went in and I got a very, kind of very cold clinical examination. And then, the physician asked my father and I'd, you know, kind of go sit in the room, and dad's dragging me over. And it was the first time I was sort of persona non grata. All of the attention shifted away from me and to my father, and he said, I'm going to ask a series of questions. And my dad said, well, is it me?

You know, do we think it's a mess? And he said, M.S. is a very rare disease. And like 400,000, 450,000 people in America have it. And, this is not M.S.. Do you think your daughter would hurt herself? Do you think your daughter would hurt her daughter? Do you think if we told your daughter to go jump off the Golden Gate Bridge, she would do it? And, Doctor Wilner, all this was just swelling up in me. I thought, why is he asking these questions? And then he said to my dad, you know, I think she has a severe form of mental illness that are manifesting in these symptoms.

Ms. is rare. And I encourage you, because your daughter's over 18, that you get her to sign the paperwork to and so she can emit herself into a psychiatric unit for evaluation, and somebody should take her daughter, at a minimum, for 72 hours till we can see what mental illness she has. And of course, I won't say the words that I said to her, but I'm here. I confirmed that I was crazy when the only thing that came out of my mouth were expletives, and my dad said, I don't think my daughter's crazy.

I think she's really sick. And he said, well, I'm sorry, I don't, I don't. I think she is, but I don't share the opinion that it's a neurological condition. And at that point, my dad kind of picked me up and he put me in the car and I would be lying to you. I mean, this story still brings a tear to my eye if I didn't say that. Probably for a minute. I remember sitting in the passenger seat. It was, you know, an autumn day, and I had the window. My dad propped the window a little bit, and I remember the wind on my cheeks, on the tears.

And for probably a minute I thought, am I crazy? Is this guy right? Like, have I completely lost the plot? And that was there were two lowest of lows for me. And that was a very, very big emotional low because until you know what's wrong with you, you cannot move forward. And you know in my book that we're going to talk about later this pre diagnosis stage, I talk about where you have all these symptoms. And there's not a name until you get a name. You know you can't be proactive in your care. You can't initiate any strategies. You can't you really don't have any hope you know.

And I like to look at hope. I've thought a long time about this word as possibility. And, you know, I was a broken young woman where I was kind of starting my life, and it felt like my life had ended that very moment. And the person that I really relied on to name it and help me feel less broken and to restore some of my confidence in myself, had just gutted me. And so that was really, like I said, one of the lowest parts for me in my journey. I'll just interject there that multiple sclerosis is like a lot of neurologic disorders, where there is not a single test that makes a diagnosis.

So you can't go to the doctor and say, excuse me, doctor, do I have multiple sclerosis? Sure. Let's do this blood test like diabetes, for example.

Getting the Correct MS Diagnosis 10:11

You can do that. And yes, you have it or no you don't. It doesn't work that way. It's a collection of symptoms and signs. And I was telling you earlier, I did an interview for Medscape this morning with an expert in multiple sclerosis, because there are now new diagnostic criteria, regarding MRI scan and cerebral spinal fluid. About how do you make the diagnosis? So it's still, well, let's put it it's in the realm of the art of medicine. Making the diagnosis very unfortunate. You found the the two worst years in the country.

Yeah, well, I have AZT now, and I don't know who you talk to this morning, but I'm probably pretty sure that I know them. And, it was with. I mean, in actually a great Ms.. Doctor, doctor Randy Shapiro. Oh, yes, I do know, doctor. She's you're watching him, but yes, very good friend of mine. He gave me one of the blurb for the book. So, you know, I had a great team of physicians that helped put Humpty Dumpty back together again. But, you know, it was much later. And you're right there it is. The art of medicine, diagnosing Ms..

And you know, so so finally, you know, that was the day I gave up on myself. And I would really like to say that, you know, sort of that patient and HCP community, you know, it's you just you don't ever want to give up on yourself and you don't want to give up on a patient that you can help. And that was the day that I came home. And, you know, my daughter looked me in the eyes and, you know, tears streaming down her face. And I was all she had. And she said, mommy, are you going to die? And I didn't really know the answer to that question, and it scared the hell out of me. And what I did know is, though, that I quit on myself, but it was like purely mother's love.

When I looked at her, I thought, I can't quit on her, you know? I can't quit on her. So there was one more neurologist that my dad had heard about, and I got an appointment and it was the middle of December, and I was sort of, you know, carried in and plopped there, and she went through a lot of the same testing that I had done before and then said, you know, Miss Snow, I'm going to meet you to the hospital. I want to do. And this is like really an early MRI scanning. I'm going to do an MRI scan, but I'm going to do a lumbar puncture, which is going to remove some of your cerebral spinal fluid, because I have a strong suspicion that you do indeed that you're not crazy.

And she put her hand on my shoulder and she said that you're not crazy, that you do indeed have multiple sclerosis, you know, and I write in my book, what a strange dichotomy that that was that day. On one hand, I was like, thank you. It has a name, you know, and if it has a name, there's something I can do. On the other hand, I was like, this is a chronic illness I'm going to have for the rest of my life. And the natural history of the disease back then, it's changed with therapies with like, you know, ambulation in a wheelchair.

Our walker at year ten, you know, to 12 depending on what your CDs score was. And at the time I was diagnosed with like a 5.5. So it was of course, I didn't know that then, but it was a very interesting day and that started my journey of hospitalizations, massive doses of I.V. steroids, because there was no FDA approved drugs in and out of physical therapy, occupational therapy, given medications I had an anaphylaxis response to that ended up causing a heart attack that landed me in an ICU for, you know, another three months.

So the first two years, three years of having Ms. to say that it was, challenging would be an understatement. It would be an understatement. But, you know, I think the great thing about science is it's always progressing. And while a treatment option, a therapy, a disease modifying drug is part of it, it's not the whole thing. But I was very lucky. I was like the eighth patient in the United States to get a drug very early on, about seven months into my diagnosis. And I'm pretty confident that when that reduced my relapse rate and my body had time to not be in a constant state, an inflammatory state, and attack after attack after attack, I was able to make some progress.

So it was a it was a battle and a journey. And I think I think the other thing for your listeners that's important is like, I'm doing very well today, you know, and I've done very well. But it doesn't mean that I don't know that I have that mess every day. Right. And it doesn't mean that I don't need to be very in-tune about what I need to do to kind of stay within my boundaries. I know that if I become sleep deprived, I'm going to have some problems. I can feel all of those old neurological deficits sort of rise to the surface. So, so it's it is a balancing act.

And like I said, I know every day I have that mess, but I've really tried to use the power of positivity, reframing my thinking, you know, using a therapy, incorporating different modalities with nutrition and exercise and, you know, I did physical therapy forever that I think all of those things have helped me have, an outcome that 30 years ago I never thought would have been possible. Well, let me go back again to the. A good news is you're not crazy. Yeah, well, that's the opinion, right? That's the good news.

The bad news is you have, multiple sclerosis, but the the good news is we have a name for it. And, in the episode that I just recorded that came out two weeks ago, it will be two weeks before, your episode or maybe a little more. I talked to, a young man who has, autism, and I asked him, I said, you know, what should parents think when they have, you know, their little toddler who, you know, gets tossed out of pre-K because they're not behaving. And finally, somebody says, you know, we we think he has, autism.

And he said something very interesting.

Living with MS and Finding Effective Treatment 16:48

I think that was very valuable. He said, you know, a lot of parents, they don't want to label their child. And, you know, there's stigma. And when people are sick, particularly with something that's a little psychiatric sounding. But he said the diagnosis is a roadmap. That's the way to get treatment, that now that you have a name for this and how and that the brain is a little different in people with autism. Well, we know that and we know what to do about it. We know what therapies help. So look at it as a as a roadmap as something positive.

And I tell my residents as students that every day I say, you know, we're just floundering around here. This patient has all these, wild symptoms, headaches. They're limping. You know, they have pain here. You need a name, you know, do they have the flu or do they have multiple sclerosis? Right. You need a name because that's going to take you down one road or another road. So, finding a name, a diagnosis, a scientific one. Yeah, very, very helpful. Well, let's talk a little bit about your book.

Yeah, I would look, you know, thank you. Diagnose the essential guide to navigating the patient's journey. There we are. It is, it is. And, it was a labor of love. And I think, you know, I thought about every time I started, you know, after I started building my business and I spent, you know, the last over two decades interacting with patients, tens of thousands of patients on a day to day basis. Every time I would share my story or, you know, share my perspective, I, somebody would say, you should write a book.

But when you're an entrepreneur and you're building businesses, I had no time to write a book. And then Covid happened. And Covid was a good thing for me. I had less time traveling, less time. And so I thought, I'll write the book. And I'm very pro women in business and women leadership. And so I that was the book I was going to write. So I sat down to write it and nothing would come to me. And I thought, why? Like, I know what I want to say. And then one night I was lying in bed and I thought, epiphany, the reason I became a female founder and an entrepreneur and a businesswoman is only one reason.

Because I got sick, because I got M.S., and M.S. has given me all of the incredible lessons and a lot of the beauty in my life. So I thought I should write the book that I wish I had had when I got diagnosed. I wish somebody had said, here, this is the emotional journey you're going to go on. You are going to work through a diagnosis phase. Agreed stage an anger stage, an acceptance. And it's not linear. Sometimes you come back to that, you know, how do you endure? I mean endurance of any chronic illness for not only you, for the people that love you, your friends and family?

That's no joke. That's hard to do. How do you endure ultimately? How do you get to a place where you can rebuild and redefine this identity? Earthquake that I had and have a life of meaning and purpose and impact, because all people deserve that in life, regardless of whether they have an illness or not. And oftentimes, I have found that people that get diagnosed with something chronic end up feeling small and marginalized, and they lose a lot of what their life was before. So I think this book will really help people reclaim who they are after diagnosis.

And I think there's a lot of great stuff in here for caregivers. You know, they are on an intense journey to, they're going to experience grief. And, so and then there's some great case studies, a lot of wonderful patients let me share their advice and their tips and their strategies. So, I think, I think so far it's been available for a month. And, the reviews are incredible. The feedback has been incredible from, you know, all different stakeholders, patients, health care professionals, general public.

So, I'm very pleased because it's vulnerable. And I almost didn't launch it because I was like, what if it's terrible? What if people hate it? But I've been pleasantly surprised. So it's an inspirational book, I think. Yeah, I would say it is. It's not a memoir, although there's a lot of my personal stories in here. I would say it's more of a self-help book, like that moment you hear the words, you have breast cancer, you have rheumatoid arthritis, you have, that you have, stories of arthritis. You have, you know, your HIV positive, whatever it might be.

This book is for that person at. That's part of their journey. And the people that love them. Okay, well, that sounds, like it may have a very wide audience. And you're right. You know, if you have a chronic illness that becomes part of your, identity and, it's not fun to be sick. And then the question is, well, is there anything I can do with this? Or how can I how can I still be me, you know, and be productive and do the things I want to do?

Writing the Book and Helping Patients 22:08

We have a big poster, one of the hallways at the hospital. I work, and it says, it says, focus on what you can do, not what you can't do. And then, and, it shows a woman in a swimming pool. And, I'm not sure exactly what her illness is supposed to be, but she might be paralyzed, you know, and but she can swim with her arms, you know? I don't know, but focus on what you can do. I think, you know, particularly when you, you know, you have a limitation and you've recognized that. Well, you can't push yourself.

You need enough sleep, right? And, there's there's things that are going to make your condition worse. And, of course, I mean, this may sound very, very elementary. I don't know which treatment you're on, but whichever one you're on, I'll wager that you're taking it religiously. Well, there you go. I was just going to say. And when you're doctor, you find one that you love, like you, who works with you. If you don't take the medicine, it doesn't work. So there's a whole part of, you know, my message about adherence and compliance and, you know, doing those things to help yourself because it is and and it can be hard at times because it's forever.

You know, I've taken a shot for a long, long, long, long time. So this, this, podcast does have a little bit of a, a public education, mission. And, I'll say that in the 1980s, when I trained to become a neurologist, we had one medication for multiple sclerosis, and that was, steroids. Yeah, I know I did a lot of them, which we still use, but we now have, I think it's up to 20 other medications that are FDA approved that have been shown to help people with multiple sclerosis. And in fact, it's a big debate in the multiple sclerosis scientific community about, you know, how do you pick you know, we have so many now, which one is the best?

And of course, you have to individualize this one is best for this particular patient because of these symptoms and this course and these side effects and so on. But it's, it's a lot better to be diagnosed. I wish that my patients, it's a lot better to be diagnosed today, but it grosses than 30 or 40 years ago because there are more effective and more choices, options for, treatment. Absolutely. I think it's 24 approved therapies now. And, you know, they run the they run the gamut the majority for relapsing form of Ms..

Although I think there's been one release for a primary, primary progressive form of Ms.. And that's, you know, super hopeful. And you're right. I mean, I have felt that many times that while I would not wish this on anybody and, you know, I never wanted it, I was very thankful for the timing because quickly after I was diagnosed, we had four drugs on the market. And you can, you know, again, anecdotally, there's been no clinical studies with this, but having worked with the Ms. community very, very closely and launching a lot of these products and working in the space for so many years, the patients, I can see a difference in the patients that started a therapy early on and have been compliant versus the group of patients that didn't have that option with treatment.

And see the outcomes are different. So I think this is where science is, amazing. Were you ever tempted to try you're out there in San Francisco, right? Not anymore, but yeah. Okay. Well, you know. Were you ever tempted to try what they call alternative therapies, where your friends pushing you to try herbs and potions and hypochondria? Oh, I've met a lot of snake oil salesmen. Like the Willner. Yeah, I've heard, you know, all of the things. Tonics, bee things, you know, a bee sting that was big for, And, of course, it doesn't work this way.

Yeah, the swank diet. I a lot of a lot of things. I for me, this is just my personal opinion. I believe that the science and the clinical trial process that takes a drug to FDA approval is the gold standard. It's that with all of the other things you do, you need to make yourself whole. Is it therapy? Is it managing anxiety or depression? It what you put in your mouth, what kind of exercise you can get even with limited mobility? What kind of rest do you take? What is your community look like? Do you feel loved and supported?

I mean, all of these do you need and are you getting occupational or physical therapy? Do you have the right kinds of things? If you need an ambulation device, do you have a cane? All of these things, together with, scientific backed, you know, FDA approved drug for me, all of these things work, and I take a very strong regimen of vitamins. All of these things for me have been part of my success story.

Snow Companies and Patient Advocacy 27:28

Well, thanks for that. That's great to hear. Now, before we wrap up, would you like to talk a little bit? I saw on your website there's something called snow Companies do you want to? Sure. So, yeah, I'll just be really quick. It's a company that I founded, you know, about 24 years ago. I'm, currently in the process of handing the baton to a new CEO and going to just retain sort of the, the founder that loves the business. But essentially, at the end of the day, I felt that because of my patient journey and the advent of all of these amazing drugs coming to market for lots of conditions that, pharmaceutical life science companies, biotech could probably serve the patients better than they were doing 25 years ago.

It was just talk to the doctor, and it was the only business that I ever seen where they didn't know and engage with their customer. So actually, I am their customer. So I started a company that said, your reputation, you know, it still is pharma. Sometimes it gets lumped in with banking and tobacco. They do great things, but they do have a reputational problem on occasion. So I said, why don't you put your money where your mouth is and support the patients? So my company helps them create programs and services and live events and patient education, material health, literacy, all the kinds of things that you need, not just about the drug, but about your life.

You know, I think about all the amazing work we've done in epilepsy. How you live your new normal. And so that sort of was the the genesis of the business. And it's, for it started in the attic of my house. And I think that last count, there's 425 people and they, all have a very big heart. And we only work with real patients with the real story to connect with other patients that want to, to to be heard and be validated. Well, it is, kind of inspirational to talk with you. Brendan, I appreciate, this conversation.

If people want to get in touch with you, what's the best way so they can go to my website? Brendan snow.com. And there's a way you can fill out and, you know, it'll pop into my email that that's where you can also you can get the book on Amazon and, you know, probably just Google me. I'm one of those people that do reply to everything. So and you know, doctor know if any of the audience, you know, is listening and they want a copy of the book and for, you know, socioeconomic reasons, they can't get it.

I'm happy to sign and mail, a copy at my cost to your patients. Just have them mention that to me, and I'll go ahead and do that. Well that's great, that's terrific. That's a very generous offer. It's way, way to get back. And like I said, you're a great doctor. I hope we get to meet in person one day, and I'll, I'll let you take the hammer to my knees and see what the hell happened. Yes. Well, Brendan Snow, thanks for joining me on the Art of medicine. Thank you. Appreciate it. And now, a final thanks to our sponsor Locum story.com.

Local story.com is a free, unbiased educational resource about locum tenants. It's not an agency. Locum story exists to answer your questions about the how tos of locums on their website, podcast, webinars and videos. They even have a locums 101 crash course at Locum story.com. You can discover if locum tenens makes sense for you and your career goals. What makes Locum story.com unique is that it's a peer to peer platform, with real physicians sharing their experiences and stories, both the good and bad, about working locum tenants.

Hence the name Locum Story. Locum story.com is a self-service tool that you can explore

Closing Remarks and Sponsor Outro 31:28

at your own pace, with no pressure or obligation. It's completely free. Thanks again to Locum Starcom for sponsoring this episode of the Art of medicine. And I'm Doctor Andrew Wilner. See you next time. This program is hosted, edited, and produced by Andrew Wilner, MD, FRCP, FAA, and guests receive no financial compensation for their appearance on the art of medicine. Andrew Wilner, MD, is associate professor of neurology at the University of Tennessee Health Science Center, Memphis, Tennessee. Views, thoughts and opinions expressed on this program belong solely to Doctor Wilner and his guests, and not necessarily to their employers, organizations, or other groups or individual.

While this program intends to be informative, it is meant for entertainment purposes only. The art of medicine does not offer professional, financial, legal or medical advice. Doctor Wilner and his guests assume no responsibility or liability for any damages, financial or otherwise, that arise in connection with consuming this program's content. Thanks for watching. For more episodes of the Art of medicine, please subscribe. W.W. Andrew wilner.com.