For people living with multiple sclerosis, or MS, there are more reasons than ever before to feel hopeful about achieving a great lifestyle. This chronic condition that attacks the central nervous system is no longer severely limiting patients’ choices.
“We live in a really good time for those with MS,” said Hamid Kadiwala, M.D., a neurologist on the medical staff of Texas Health Fort Worth. “We have a lot of therapies that can help people. We treat aggressively with medications and other therapies. Our goal is to keep MS at bay as long as possible.”
Receiving a Diagnosis
Jaclyn McDaniel, a mom of two, was 35 when she was diagnosed after she began showing symptoms during pregnancy. Even though her symptoms had subsided, an MRI scan done after her baby was born confirmed that she had lesions on her spinal cord, which could be a marker of the neurological disease.
“I was thinking, I’m totally fine — this is crazy,” she remembers. “You hear about people with MS and they’re in wheelchairs and they can’t walk or see. That’s the impression I had.”
Kadiwala said that while many patients are relieved to finally have a diagnosis — and a name for their symptoms — they often misunderstand that a full and active life is possible for many. “It’s bittersweet,” he said. “They don’t want the diagnosis, but it confirms that these symptoms are not just in their head.
“Years ago, people used to say it was 20 years from diagnosis to wheelchair, but that just doesn’t hold true any longer. Misconceptions about MS have permeated society and the internet,” he said.
An excellent support team can be a critical part of dealing with any chronic diagnosis, and especially MS. From choosing physicians, nurses and therapists who are committed to your care, to finding emotional support in friends and family, a cadre of caring people can make all the difference for a person living with MS.
“You need to have a doctor you can discuss your symptoms with — someone who knows what they are talking about and understands the available therapies. Working with a doctor you trust is really important.”
“You need to have a doctor you can discuss your symptoms with — someone who knows what they are talking about and understands the available therapies,” Kadiwala said. “Working with a doctor you trust is really important.”
McDaniel’s team included not only her neurologist but also a functional medicine specialist and a very special family member.
“I spent a lot of time picking my care team, and I trust my doctor,” she said. “If my doctor tells me I don’t need to worry about it, then I probably don’t need to worry about it. If something comes up, I can call her. My husband is also helpful — he reminds me to take my shots.”
Both Kadiwala and McDaniel stress the importance of going to your doctor with questions, rather than only searching online for information. Relying on the internet may end up scaring, rather than informing you.
“I always tell people to stop trying to research everything online and just go to the doctor. It’s important to be educated and do your due diligence to manage your disease. But you have to trust your care team,” she said.
Mind Over MS
For many, a positive mindset is not only a goal but also a tool to managing a chronic disease like MS.
“As with any disease, you can’t let your diagnosis define you,” Kadiwala said. “Yes, you may have to take a medication, but that might just be the extent to which you let it affect your life. It’s really important to have family, friends and therapists who you can vent to and to talk about issues that you may be having.”
“I just went into it with the mindset that everyone has a cross to bear,” McDaniel explained. “Some people have migraines or high blood pressure, or whatever. I just think, ‘Well, this is what I have to deal with.’ But I am as active as I can be.”
For her, that activity can be anything from kicking a ball with her toddler in the park for two hours or hiking up hills in Mexico. This busy mom of two works full time and is proud to be raising two active boys.
“I think at first MS seems really overwhelming, but it gets more manageable the more you deal with it,” she said. “The MS hasn’t kept me from doing anything I like to do.”
Get tips on Living Well with MS from the National Multiple Sclerosis Society.
Find a neurologist on the medical staff of a Texas Health hospital near you.