MS advocate and real estate investor Tamiko Ryan talks about the frustrations of getting proper treatments and shares strategies to help you get the support you need to manage MS and thrive.
Multiple sclerosis (MS) is a neurological condition in which your immune system attacks the protective layer around your nerve fibers. MS can cause muscle weakness, motor symptoms, vision changes, and fatigue, among many other symptoms.
There isn’t a specific test for MS. It’s a diagnosis of exclusion, which means a doctor
Treatment for MS is lifelong and is often costly. A 2022 study found that the average per-person annual cost for MS was $65,612. Retail prescription medication accounted for more than half of that cost.
For many people living with MS, the financial cost can be a significant burden. It’s just one of many potential barriers to treatment. Resources for support are available but can often be hard to find without guidance.
Tamiko Ryan received her MS diagnosis in 2005. Since then, she has used her voice to advocate for herself and others with the condition.
Tamiko spoke to Healthline about her views on self-advocacy, the barriers to treatment, and how you can find support while living with MS.
*The interview has been slightly edited for language and brevity.
I started volunteering soon after my diagnosis because I wanted to know more. I needed to know what this disease is going to do, how it impacts my life, and also how I can impact other people. So I started volunteering for the National MS Society in 2006.
I’ve been to Capitol Hill, and I’ve met my state representatives. Over the years I’ve done multiple things.
But over the course of time with MS, I discovered that it’s a journey. You have to speak up for yourself. You have to know yourself. You have to be willing to be open. And that is a difficult point for a lot of people with MS.
Openness is very difficult. When you get a diagnosis of a chronic illness, it’s a shock to the system and people respond differently. Being open about your illness doesn’t mean you have to tell everything. But you need to be a little open so people know how to help you and where that help comes from.
There are a lot of agencies, a lot of programs that a lot of patients with MS could benefit from. But how will that information get to you if you’re not open about your illness? So the struggle is balancing openness and wanting to be private at the same time.
One of the things I love about advocacy is that not only do I advocate for people with laws, but I also advocate for people by offering my experience through support groups, through friends. I love doing speaking engagements. When it’s time for selecting your insurance at work, I will set up a table so that people can learn about what MS is.
So I think advocacy is more than just about pushing for laws. It’s about pushing for individuals to say, “Hey, I have this, and I need help,” because I was once there.
The number one barrier is cost of medication. It’s very expensive to treat MS. Not only is it expensive to treat, it’s awfully expensive to get the diagnosis. And if a lot of individuals don’t have healthcare coverage, they usually don’t get that diagnosis. So the number one barrier is cost.
An MRI or CT scan, an ultrasound, going to a neurologist — all of those things have what they call out-of-pocket or deductible expenses. And a lot of individuals can’t afford them.
Many people of racial or ethnic minority background or lower social economic status can’t afford to get the diagnosis. So the numbers are skewed about who has it and who doesn’t. Over the years, it has changed, but it’s still a barrier.
In my case, I had great insurance. Unfortunately, that’s not always the case for everyone with MS. There are insurance carriers that make you jump through the hoops. So we’ve got people making decisions that interfere with the impact of the condition.
The sooner people can figure out which medication works for them, the sooner and better they can manage the condition. But if they’re unable to access the right information or access the drug because of an insurance policy, the delay is going to impact their lives. It may mean illness progression.
There are so many programs out there that will help people cover the cost of medication and treatment. But how does that information get to them? Advocacy. Advocacy is key.
One of the things I would love to push for is that when a patient gets a diagnosis, they should be given a pamphlet that has information, like, “Here’s what you’re looking at, and here’s where you can go to get assistance.” Contact the National MS Society, because they have programs in place that can help you cover those costs.
Find a support group. Support groups have tons of information because they’ve been there, done that. Also, take the time out to ask your doctor, “Are you aware of anyone who can help me in my situation?” Doctors have access to information that a lot of patients don’t realize they do. They do have a lot of referral information.
Another one is to contact the drug manufacturer. We don’t think to ask, but they have patient discount programs, and if you qualify, it’s amazing how much of your medication can be free to you.
So there are methods. I think individuals just don’t know they exist. I would love to have a system in place in which they get that information and it’s easier to find.
There are more agencies that are coming out that give support. The National MS Society has a navigator system. You can call the 800 number or you can ask them questions, and they will guide you to where you can find services and where you can find medication help. If you still want to work and not be on disability, they will put you in contact with recruiters. So they have a lot to offer.
I find support groups on Facebook and on X (formerly Twitter). It’s a good way to connect.
In my case, I’m starting a new medication. It’s my ninth medication. I know that treatment is key. So if one medication doesn’t work, change. I’ve used Facebook to make friends, and we’re able to discuss what medications we took and their effects. It’s a great way to get firsthand knowledge of what to expect.
This doesn’t mean the information is always accurate, and it doesn’t always reflect what you experience, but it’s definitely helpful to know that someone else has experienced what you’re experiencing or that someone else has gone through what you’re going through.
I always say to people (and they laugh at it, but it’s so true), “Enjoy the ride.”
Enjoy the ride. Life is a long journey. It’s not a sprint. MS changed my life. I didn’t have a bad life, but I was unaware of a lot of things that impacted so many people. I got diagnosed at 38, 37, and I’d already had my children. I’d been married a long time. And all of a sudden I got this diagnosis, and I was like, whoa!
So my first intention was to take it head-on. But not everybody felt the same way. So I started volunteering.
Now, 17 years later, I’m doing public speaking. I’m standing on stage and talking to 1,000+ people about the journey. So I really believe I can encourage people to take it head-on. It’s a part of life.
The ride is what you do in life. It’s all about how you find the good in everything. MS is a horrible disease. But I’ve made so many great friends along the way.
Tamiko Ryan, a real estate investor for over 16 years, embraces the motto “Enjoy the ride.” Since getting a multiple sclerosis diagnosis in 2005, she has dedicated her time to educating others about the condition and advocating for the National MS Society through volunteering and fundraising events. Her mission is to support those affected by MS to find the help they need to live their best lives.