MS Patients Struggle with Misdiagnosis and Ineffective Treatments, Survey Finds

[me/cfs 27931]

Much of this sounds strangely familiar. Except the "we have a lot of treatment options" part, of course.

MS Patients Struggle with Misdiagnosis and Ineffective Treatments, Survey Finds
https://multiplesclerosisnewstoday....-of-ms-and-ineffective-treatments-are-common/

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.

Forty-two percent said they were mistakenly diagnosed with other conditions, including depression, migraine disease, fibromyalgia, or chronic fatigue syndrome.

“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.”

“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.

 

[Mohawk1995]

@Webdog "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."

We actually wondered early on if our son had some type of atypical MS. Interesting that even though this is a much more "researched" disease with more recognizable diagnostic tests, it still shares these same issues with a much more difficult disease like ME/CFS. No wonder people with ME/CFS feel like they are misdiagnosed and ineffectively treated (which of course they often are)!

 

[me/cfs 27931]

We actually wondered early on if our son had some type of atypical MS.

I wondered this about myself too. And although 3 neurologists agree that I don't have MS, I still do wonder at times.

 

[Basilico]

I love how every doctor and article about MS talks about all these wonderful treatments available.

MS drugs have been proven to reduce relapses in half of the people taking them. Not eliminate, but reduce. And half of people taking them get no benefit at all. Additionally, those drugs have incredible side effects. The injectables result in necrosis of the flesh at injection sites, which is permanent. All the drugs are toxic to the liver, so many people must take cyclical breaks from them until liver function has improved. Then there's hair loss, serious GI problems, flu-like symptoms, etc...

With CFS, there is a complete lack of treatment and doctors pretty much shrug their shoulders. With MS, neurologists are often pretty aggresively pushing very toxic drugs that have limited benefits for most. MS may have more visibility and sympathy, but the treatment options aren't much better than doing nothing.

I don't think that being diagnosed with MS vs. CFS is necessarily better in terms of treatment options. Maybe only for public awareness.