MS patients on how they will improve care, diagnosis

REMOVEecause multiple sclerosis involves nerve damage that can occur throughout the body, including brain connections, symptoms can be very variable and progressive. That makes each patient’s journey unique and can create challenges for both sides of the examination table.

Here’s what eight patients wish their doctors knew when helping them manage their condition more effectively.

The diagnosis must be hers private appointment

Although Dr. Claire Warren – a 70-year-old doctor in Stonington, NY – has extensive experience treating patients with a wide range of conditions, it wasn’t until she was diagnosed with MS that she really understood what it felt like. how. diagnosed with a chronic condition. MS is a disease of the brain and spinal cord that can cause symptoms such as vision changes, balance problems, and weakness.

“Honestly, I’m a hot mess,” she said. “By the time I went, I had a lot of symptoms, but I was in denial about fatigue, numbness, and growing mobility anxiety. Then even when I had answers about what was happening, I refused to accept its devastation.”

After her doctor said, “You have MS,” Warren realized, she didn’t hear anything after that. The same is true for Johnnah Rosano, a 39-year-old Boston resident, who said it felt as if her brain shut down shortly after that diagnosis was made. Because this is a life-changing condition, being able to adjust to the news takes time — and it helps if you have an appointment simply for a diagnosis and not all-inclusive. possible treatment options, Warren suggests.

“I think it would be helpful for doctors to know that this is very dangerous,” she said. “This disease will affect your entire life, and that means you have to make a mental adjustment, which takes time.”

Read more: ‘I was burned all the time.’ Selma Blair discusses her MS diagnosis and hopes for effective treatments for chronic diseases

Please take the time to explain test and pictures

With MSThere are so many tests out there that it can be overwhelming to understand the purpose of each one, says Vickie Hadge, 56, of Connecticut, which is far less than what the tests are supposed to be. that is supposed to convey.

While patients may have access to results in their patient portal, it can be confusing to navigate through terms like enhanced white matter and to understand why 10 vials of blood are needed.

“Even if you have a printout of what each test is supposed to show, that helps, because the disease often feels overwhelming,” says Hadge. “Clearness and understanding can reduce that feeling, and that’s a big plus.”

Another aspect of caregiving that would be helpful, she added, is simply communicating different assessments that include what and what to expect. For example, a functional assessment usually takes about three hours and Hadge goes into the first assessment without knowing why she went, what will happen during the appointment, and the outcome that could affect the outcome. How is her treatment? She says that lack of preparation can cause stress and anxiety, potentially worsening MS symptoms and leaving patients feeling helpless.

Grief counseling is a useful addition to treatment

Mental health is a major component of dealing with MS, and while seeing a therapist is often helpful, focus on grief Brittany Quiroz, 33, who lives in Corona, Calif, believes special makes a strong starting point.

After all, the diagnosis and progression of MS can involve a loss of sensation, in terms of both physical function and potential future plans, as well as cognitive challenges. Quiroz suggests that being able to find peace in an illness would be valuable for disease control.

“Illness management like this is a full-time job and emotional support is part of the treatment,” she said. “If doctors can have those resources available so they can share them right away, that will help you deal with the stress of having MS.”

Understanding our frustrations helps us feel heard

Like a disease like lupus, MS can take years to diagnose after symptoms begin, and those symptoms can change over time—sometimes even from month to month. Sonda Rossman, 51, of Detroit, said:

“There are many invisible symptoms, like cognitive decline, fatigue and sensory problems,” she says. “These do not show up on lab tests or imaging, so I believe doctors need to rely less on what the results say and more on what the patient is saying. Don’t tell me I’m fine because that’s what the MRI says. I know my body, and I know when it’s not okay.”

Another frustration could be the lack of coordination among experts, says Rosano. For example, she started having high blood pressure and her neurologist recommended anxiety medication because “people with MS don’t have high blood pressure.” But she was not worried so she asked to see a cardiologist. He told her that people with MS often see blood pressure problems and prescribe medication to deal with this.

“This is just one example of how often we have to talk from doctor to doctor, because for many of us, there is no one person who can see the big picture,” says Rosano. “So in addition to being sickened by an illness that often includes fatigue, we must be advocates of our own health. It’s exhausting and it can make people reluctant to talk about their symptoms, which is clearly not ideal.”

We want to discuss nutrition and other lifestyle changes

Warren says nutrition is not taken seriously in medical schools, who have had to educate themselves on the subject, both before the MS diagnosis and after. Her sister, an ER doctor, started eating plant-based diet as a way to reduce dementia risk and encouraged Warren to try it for her MS symptoms. She’s been eating that way for seven years now, and she’s seen dramatic improvements in her “brain fog” and energy levels.

“Although MS is associated with inflammation and is an autoimmune disease, not once has my doctor talked to me about what I am eating and whether it could make my symptoms worse,” she said. or not. “There is a connection between your gut health and your immune system, so it makes sense to improve your diet that could help your MS. But I know it’s a challenge, because doctors don’t get paid to talk to people about nutrition; it is not considered a priority. But it really should be.”

Jenna Green, 37, who lives in Mansfield, Mass., adds that patients are also eager to hear about the impact of other lifestyle changes. Collectively, conversations like this acknowledge that MS affects every aspect of a patient’s life, Green says.

“To live your best life with MS is dependent on everything from what you’re eating to how you move to how you manage stress,” she says. “Even small changes can make a huge difference for us, so we wanted to talk about that. Help us put together a medical team that includes not only specialists but also specialists like therapists and nutritionists.”

Another important lifestyle habit is connecting regularly with people with MS, says Green. Doctors who do a little research on what those communities might be and how patients can reach them will provide a valuable service, especially for those newly diagnosed and feeling depressed, she added.

“This can be a very uncomfortable diagnosis,” says Green. “Connecting with others and having strategies to help us take more control of our health can help us regain some of what we lost when we confidently make our health care decisions.” self.”

Many of us are well informed about our condition

What Rossman has found in the nearly three decades since she was first diagnosed is that the MS population tends to stay up-to-date with research and frequently connect with each other on symptom management, potential therapies, and more. and clinical trials.

“What a lot of people do when they are first diagnosed these days is go online and we are a very active patient community — we look forward to sharing insights and information,” she says. . That means doctors and other healthcare professionals should consider patients as part of the disease management team, she said. For example, talking about possible research directions in an area like personalized medicine doesn’t give off a false sense of hope; it brings patients into the discussions they want to have.

“We wanted to feel involved in what was happening with MS on a larger scale, not just with our specific treatment,” says Rossman. “I think doctors sometimes underestimate the power of a patient community and how that drives advocacy and action for us.”

Read more: Experience reducing power when flying when disabled

We want you to understand the nuances of treating black patients

According to the National Multiple Sclerosis Association, more Black people have MS than previously believed, and they may have different symptoms than people of other races. They also tend to have more aggressive disease progression, greater disabilitymore difficulty with mobility and coordination, more frequent relapses, more cognitive and visual symptoms, and earlier onset of disability.

Even so, some doctors may still think that MS doesn’t affect black people, especially black women, that much, says Azure Antoinette, 38, of Atlanta. Her mother, sister and father had MS, but it took her five years and increasingly severe symptoms to be diagnosed, she said.

“Health equity for African Americans in this country is a big deal, and that could affect what is happening to people like me,” she added. “You can’t imagine how invisible you can feel when no one is listening to you, and it’s heartbreaking. What I want is for doctors to be able to hear me, no matter what I look like.”

Ashley Ratcliff, 37, of Long Beach, California, said another important point for doctors to consider is that many Black patients may not trust the health care system and medical professionals. economic. The United States – such as the Tuskegee experiment and the ongoing disparity in maternal mortality among Black women – can take time and patience to gain patient trust.

“Please be kind to us and be transparent about our prognosis and all the options available in our treatment,” Ratcliff said. “Doing to understand them. We are the ones who really deal with the trauma of being diagnosed with a terminal illness.”

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