Healthy Living

The Symptoms of MS That are Difficult to Describe

Author: Penelope Conway © Positive Living with MS:

The Symptoms of MS That are Difficult to Describe

If you are suffering from MS, then there may be symptoms that you experience on a day-to-day basis, or perhaps just occasionally. However, with a few of these symptoms, it is not so easy to put a name to them or even try to describe them to others. This can be difficult due to your cognitive dysfunction, but the symptoms can also be difficult to describe because they may not exactly be “visible” on the outside.

Obviously, your neurologist and nurse know what you are talking about when you describe these feelings; however, how do you explain them to your family and friends?

A lot of individuals generally don’t understand when you are trying to explain an invisible symptom. Sometimes, it may sound as if you are exaggerating or making up an excuse. The truth of the matter is that it may not be because they don’t believe you, but some just flat out do not know how to respond to your explanation. After all, you can’t exactly understand how a person is feeling until you have walked a mile in their shoes.

For example, try saying “MS Hug” to someone. To them, it may sound pleasant and cuddly – they might even think that it is some sort of support group. In reality, it can be a shock to those who experience it. As you are well aware, an “MS Hug” is unpredictable and it involves a tight feeling around your chest or ribs. Sometimes, it can squeeze you really hard and not let go too quickly.

Your symptoms are not just physical; there are also emotional changes that you go through. Sometimes, you just get overwhelmed and it’s perfectly understandable. We are all human and that one change or event can set the tone for the rest of our day. If you have experienced any of the following symptoms, just know that you are not alone. Those long lists on medical websites don’t always tell the whole story.

Dizziness and vertigo

You know that feeling you get when you have stood up too quickly or suddenly? Everything goes dark for a moment and things in the room begin to spin? You can tilt your head a certain direction and you may feel as if you are on a roller coaster.


Pain and lots of it – MS can cause pain that is nothing like stubbing your toe. Your nerves may feel as if they are on fire and unfortunately, this feeling is doesn’t always go away immediately.


Spasticity or a constant Charlie horse – call it whatever you like. Sadly, any muscle can be affected and if you happen to kick without warning – what can you do? There are what they are - involuntary spastic moments.


That feeling as if you have been hiking for 30 miles after two days of no sleep all the while carrying a backpack filled with rocks on the hottest day of the year - yeah, that is fatigue. It is that moment when your legs can no longer hold you up and every muscle in your body begins to hurt. Just as soon as you sit down – bam! you are out like a light.

Numbness and difficulty walking

You may feel numbness in your arms, legs, face, and body. You attempt to stand up from your chair to get to the door and you end up walking into a wall instead. Some individuals may even perceive you as being drunk when in reality, that feeling as a part of your body falls asleep is never fun.

Vision problems

Vision problems are pretty common in individuals with MS. You may not be able to read an email clearly because the words seem blurry. No one enjoys having blurry or double vision - unless maybe you are seeing chocolate x2.

Hearing loss

Hearing loss, ringing in the ears, and fluttering sounds can be downright irritating. For some, it may feel like water has been trapped in the ear, muffling sounds. To most, it is as if you are carrying your own band in your head.


Itch, scratch, itch, scratch, itch, scratch, and repeat. When your skin begins to itch, you just want it to stop.


Lack of sleep, depression, certain medications, damaged nerve receptors, stress, a bladder infection and more – all of these factors can cause headaches. Unfortunately, aspirin doesn’t help.


Not all seizures are the same. You may experience jerking movements or even complete lapses of consciousness. Your legs turn to jello and there are those moments when you appear wide awake, and yet you are completely unresponsive – not exactly the life of the party.

Breathing problems

MS can cause muscle weakness in the respiratory muscles. This feeling is extremely uncomfortable and it may feel as if something has wrapped itself around your torso and won’t let go. 

Bladder and bowel problems

Long bathroom lines are a drag and for an individual with MS, they are even worse. When you have to go, you have to go. Suddenly, you are well aware of the fastest escape route to every bathroom in the place.

Mood swings

Mood swings can be so strong that they can even cause you to laugh at the most inappropriate time, such as when someone is sharing their most traumatic experience. You may cry for no reason at all and become extremely frustrated at things that never really bothered you before.

Cognitive difficulties

Cognitive difficulties mean that you experience difficulties remembering someone’s name, birthday, phone number, or scheduled appointment. Multi-tasking is out of the question when MS brain takes over.

Sexual problems

This is one symptom that no one feels comfortable talking about. Disrupted nerve signals, numb body parts, and emotional changes are all things that can make intimacy more difficult. In such instances, all that is needed is kind consideration, patience, and care.

Effective treatment cannot begin until your symptoms are thoroughly evaluated and an accurate diagnosis has been made. In order for this to occur, you need to speak with your team of health care professionals and provide them with all the information regarding your condition. There is no shame in admitting you are experiencing difficulties. When describing your symptoms, it helps if you can be as specific as possible and give examples of how the symptoms are affecting you and those around you. These professionals will likely start the evaluation process and refer you to individuals who specialize in your areas of need.

Although mood and cognitive changes are common in individuals with MS, the good news is that there is much that can be done to reduce the severity of symptoms and their negative impact. Start by educating yourself and others about these symptoms. With a greater understanding of what they mean and don’t mean, those around you are in a better position to hear your concerns and provide support in the best way possible. This also creates a language for better communication among loved ones, thus reducing stress and conflict. As a result, you can improve your own well-being and quality of life.