A significant percentage of multiple sclerosis (MS) patients struggle with improper diagnoses and ineffective treatments, a national survey of more than 5,300 patients found.
Another survey finding was that fatigue and pain are two of the symptoms that have serious impacts on patients’ lives.
People with multiple sclerosis said an accurate diagnosis can prove difficult to obtain. Almost 50 percent of respondents reported having to make more than five office or hospital visits before receiving their diagnosis.
Forty-two percent said they were mistakenly diagnosed with other conditions, including depression, migraine disease, fibromyalgia, or chronic fatigue syndrome.
“Getting a proper MS diagnosis continues to be a difficult process. I know many people who end up with inexperienced doctors or even have symptoms they don’t mention because they don’t realize it could be MS-related,” Devin Garlit, a patient advocate, said in a press release.
The survey also found that 65 percent of patients start treatment within three months of their diagnosis.
“Finding the right treatment can be a difficult process that takes a lot of trial and error. You may have side effects with one, the next may not work well, another may not be covered by insurance,” Garlit said.
“We’re very lucky to live in a time where we have a lot of treatment options. It takes a lot of perseverance to find the right one, though. It was 13 years before I finally found a disease-modifying therapy that has stabilized me,” he added.
There are many symptoms of MS. Survey respondents listed the major ones as fatigue (87 percent); numbness/tingling (75 percent); memory loss/brain fog (70 percent); muscle weakness (64 percent); pain (55 percent); depression (53 percent); and vision problems (30 percent).
“Many people don’t realize that some of the worst MS symptoms are invisible,” Garlit said. “Severe pain, depression, and cognitive difficulties like memory loss are common in those with MS, but many MS patients themselves don’t even realize they are related to the disease. Not only are these symptoms difficult to live with, we also struggle to explain them to others, sometimes even doctors, because they can’t see them.”
Tim Armand, president of Health Union, said the survey showed that “people with MS struggle with a disease that impacts all aspects of their life in ways that many around them simply cannot see.”
“This is where a community like MultipleSclerosis.net can make a significant difference. It brings people with similar experiences together to provide and receive support, share information, and feel validation,” he said.
Here is a video about the survey: