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How MS Causes Memory Loss and 5 Tips To Help With Forgetfulness

Updated on November 7, 2024

Memory loss due to multiple sclerosis (MS) can be an unexpected and distressing symptom. Cognitive changes in MS — including trouble with problem-solving and the ability to process information — affect between 40 percent and 70 percent of people with the condition. These problems usually aren’t severe. However, if you’re experiencing memory loss and it’s affecting your daily life, talk to your doctor about switching treatments — particularly if other MS symptoms are also worsening.

On MyMSTeam, more than 23,000 members have reported issues with memory loss specifically. “I can remember 20 years ago like it was yesterday, but I can’t remember what I had for supper last night,” shared one member.

“I felt bad when I couldn’t remember the name of the doctor I’d just seen four months ago when I got to the hospital and signed in,” another member wrote. “The receptionist told me it was OK and that they would take care of it. I went to my seat in the lobby feeling like I failed a fifth-grade test.”

“I’m finding that my main MS symptom at this time is cognitive. I’m getting very forgetful. Can't think of the right words to say and just feel clueless sometimes! Any helpful hints?” a member asked.

How Does MS Cause Memory Loss?

Everyone forgets things sometimes, so it’s not always clear whether MS is responsible for a lapse in memory or if another medical condition or issue — like lack of sleep — is to blame. However, MS can cause memory loss and other cognitive issues (thinking problems). This is due to immune system dysfunction that damages the myelin sheath that protects nerve fibers in the central nervous system.

Experts are still learning exactly how MS may cause memory problems. Neurology research has shown that memory can be affected in people with MS if brain lesions occur in a circuit that’s located in the hippocampus. The hippocampus is the area of the brain that controls memory and learning.

MS has also been shown to affect particular types of memory. One study showed that people with MS were more than three times as likely to make task substitution errors than people in a healthy control group. Task substitution errors occur when it’s hard to think of or say the right word and you remember or speak incorrectly. MS memory loss has also been found to be greater in tasks that are time-based.

Some studies show that people with progressive MS have more memory loss and thinking problems than those with relapsing-remitting MS. In some cases, medication side effects, anxiety, fatigue, or depression — all of which can occur with MS — may also cause forgetfulness.

People with MS often benefit from strategies to address cognitive symptoms, such as memory loss. Here are some steps you can take to help prevent memory problems from negatively affecting your quality of life.

1. Track Your Usernames and Passwords

These days, it seems like everything requires a new username and password. If you set up online banking, sign up your kid for school lunch, or connect a streaming service to your TV, you’ll need to create a username and password. Keeping track of all these login requirements can be overwhelming for anyone, especially someone with MS-related memory troubles.

One member made light of this situation: “I can set up a connection and password for a website and then forget it all before I find a pen to write it down!”

Keeping this information in a known place can make daily tasks much easier. If you’re not concerned about others getting into your accounts, you can stay logged into sites that you frequently use.

Some people keep a login list on their phones or in a notebook. Just be aware of the risk that someone untrustworthy could find your list. Password management apps can also help retrieve passwords while keeping them secure. Most important, find a system that’s easy for you to use.

2. Put Things in Designated Areas

You may have heard the old saying “A place for everything and everything in its place.” This simple tip can make the difference between taking two minutes to head out the door and spending 30 minutes looking for your keys, wallet, or shoes.

“I’m misplacing things and then unable to remember where I left the item, so I try to put things in the same place to recall more easily,” said one MyMSTeam member.

Choose functional locations, like a hook near the door for your car keys, so you get into the routine of hanging them up as soon as you get home. Labeling containers or drawers with the items they hold can also help you stay on track.

Not everything needs a set location, but important items like your medications will be easier to keep track of if they’re always kept in the same place.

One member expressed frustration about forgetting to take medication.“I got my MRI results tonight, and I’m kicking myself because I have new lesions partly because it has been so hard for me to remember to take my second pill in the evenings,” they said. “Ugh! I hate fatigue and forgetfulness!”

Others have suggested putting the pills in a visible area as a reminder. “I got a pillbox and put it where I couldn’t help but see it,” wrote one member. “That’s helped me remember to take my meds.”

“I got a pillbox and put it where I couldn’t help but see it. That’s helped me remember to take my meds.”
— A MyMSTeam member

Another team member said, “I use this app called CareZone, and it sends me reminders of when to take my meds.”

MS-related forgetfulness can also make it hard to remember if you already took your meds for the day. Using a pillbox divided by the days of the week or keeping a checklist next to your pillbox can help you keep track.

3. Avoid Distractions and Multitasking

Focusing on one thing at a time lowers the chances of losing your train of thought or forgetting tasks you intended to do. Reducing distractions can help with brain fog and sudden forgetfulness that can become frustrating and self-defeating.

When you’re working on a task or activity, let others around you know that you can get easily distracted and would prefer not to be interrupted. Some tasks might be easier to complete in a quiet room without your cell phone or other distractions. Let your employer know you require a quiet space to be most productive. Find out if you can take advantage of remote working opportunities or use headphones to block outside noise.

If you get lost while driving, turn off the radio and minimize other distractions as much as possible. Learn how to adjust your phone’s settings so you can easily turn on GPS navigation to help you stay safe and on the right course.

4. Record Information You Need

Keeping clear records gives you a handy backup when your memory doesn’t deliver. For instance, you could carry a pen and a small notebook or pack of Post-its for jotting down reminders.

One member described their daily habit: “I have to make a to-do list every day, or I will forget. Also, I may not have motivation. The list gets me up instead of lying around all day, which I want to do. I also journal and have notes everywhere, lol. It makes things easier for me.”

“I have to make a to-do list every day, or I will forget. … The list gets me up instead of lying around all day.”
— A MyMSTeam member

Another joked, “I understand about the memory thing. My trick … write everything down. My lists have lists! I swear, I keep Post-it in business. Just make sure you know where you put the list. :)”

You might feel it’s quicker to snap a photo on your smartphone, send yourself a text, or make a voice recording. For example, if you’re concerned about forgetting where you parked, you can take a quick picture of your parking spot near a street sign or landmark so it’s easier to find later. Incorporating small tricks like this into your daily life can save you time and needless worry.

5. Set Reminders

Setting alarms on your phone or using a voice assistant, such as Google Assistant, Siri, or Alexa, can help remind you of tasks or appointments. Cell phone alarms often let you make a note of what the alarm is for, so you don’t forget why you set it.

“Alexa is my friend. I set her to take my meds, pay my rent, add appointments, and stuff like that. You can even set her to remind you to eat,” a MyMSTeam member wrote.

6. Practice Memory Recall

Exercising your brain is vital for maintaining cognitive functions like memory, whether or not you have MS. To put your memory to work, you could challenge yourself to learn a new skill or play board games that exercise your short-term memory, such as matching games.

One member shared their strategy: “Trying to read a great book. I read a few chapters. Then, by evening, I have to reread it. It helps my memory recall.”

“Trying to read a great book. I read a few chapters. Then, by evening, I have to reread it. It helps my memory recall.”
— A MyMSTeam member

If your memory feels a little less sharp than usual, be kind to yourself. Find activities with friends or family members that stimulate your memory, such as crossword puzzles or trivia games, and also allow you to have some fun in the process.

Discuss Your Memory Loss With Your Doctor

Ask your neurologist for medical advice if you experience memory loss or cognitive difficulties that interfere with everyday life. Let your health care team know what types of things you have a hard time remembering, including short-term or long-term memory problems.

Your doctor may suggest testing to identify cognitive problems and set a benchmark for your current abilities in order to track any future cognitive impairment or cognitive decline. Depending on your particular condition, your doctor may recommend cognitive rehabilitation to help with cognitive symptoms such as memory loss. Your doctor can also help determine if your memory concerns are likely symptoms of MS or another lifestyle factor or health condition.

If you feel any of your MS symptoms are getting worse, you can talk to your doctor about switching treatments.

Talk With Others Who Understand

MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, over 216,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.

Have you experienced memory problems from MS, and if so, how do you manage them? Do you have any tips for others who have recall difficulties? Share your thoughts in the comments below, or start a conversation by posting on MyMSTeam.

Luc Jasmin, M.D., Ph.D., FRCS (C), FACS is a board-certified neurosurgery specialist. Learn more about him here.
Anastasia Climan, RDN, CDN is a dietitian with over 10 years of experience in public health and medical writing. Learn more about her here.

A MyMSTeam Member

I see what you did there MyMSTeam. Made me look up my username and password. At least my cheat sheet was right next to me.

November 14
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