The day you receive a multiple sclerosis (MS) diagnosis can feel surreal. It is common to be in denial and want to ignore it. But over time, you start to see that your symptoms match what the doctor explained would happen.
For most people, there is a moment when they cannot deny their symptoms or their diagnosis anymore. And life goes on.
To find out more about what that moment looks like, we turned to the MultipleSclerosis.net Facebook page. We asked the community to fill in the blank: “You know you have MS when _____________.”
More than 250 people in the community responded. Here is what they said.
You grow tired of being tired
Most of the community said they have a hard time sleeping. Not getting enough sleep leads to a feeling of fatigue and drowsiness that can last all day. This then becomes an ongoing cycle of feeling exhausted and being unable to catch up on sleep. This, in turn, affects your ability to focus.
“You are so tired of being so tired.”
“You are so tired all the time no matter how much rest you get.”
“You are up at 2:53 AM with insomnia, knowing you have to rise at 6:00 AM to go to work, where you will hardly be able to function from fighting heavy fatigue.”
Walking becomes difficult
Several people shared that MS robs you of your ability to walk easily and without wobbling. MS weakens the muscles, especially in the legs, so walking is one of the first activities where MS symptoms become noticeable.
“You are walking like you are drunk, but in fact you are not drunk.”
“Your balance is nonexistent.”
“You have to focus on the size and speed of your steps, etc.”
“You face-plant and fall flat on the floor because your brain does not connect with your leg and foot.”
You have a hard time talking
The community also mentioned struggling to talk. Speech can be slurred, too slow, too loud, or off in a number of other ways. For some, this is a mere annoyance. But for others, it has become so frustrating that you do not want to be in situations where you have to talk. This can lead to isolation and loneliness.
“You talk like you are drunk.”
“You are a master at charades because you cannot get the words out of your mouth.”
“You slowly stop attending functions because you have lost your ability to be conversational and act appropriately in social settings.”
You lose sensation in your body
It is incredibly common for people in the MS community to deal with feeling numb in their face or limbs, or elsewhere in the body. The numbness can feel like part of your body is asleep and unable to work properly. Several people shared that they have simply accepted this feeling as their new normal and learned to live with it.
“You feel raindrops on your arm and you are indoors.”
“You have random ghost spots that itch like hell! Also, your hands go numb for hours.”
“The tingling never goes away. You just learn to live with it.”
“You get the numbing tingling feeling down your body with spasms and cramp feelings on top of that!”
Thank you to everyone who shared their experiences for this story. It is incredibly helpful for people to know that they are not alone in having these symptoms. Rather, this is a shared challenge understood by so many.