Signs & Symptoms

Let me preface this next series of posts by saying everybody is different and my symptoms may differ a lot or a little from other people who have CMS.  But I believe one thing in common is weakness that occurs with over exerting the muscles.

I’m doing these in no particular order…and I will split the posts up into individual posts for each type of symptom.  I don’t want all my posts to be book length!  I think I’ll lose some of you who don’t like to read!  Lol

1. Facial/ocular weakness (probably the least severe symptom for me)

I have an awkward crooked smile. I didn’t always, but it developed later in my adult life.  The left side of my mouth is weaker and so when I try to smile, that side of my mouth does not want to move as much as the right.  For some reason I’m extremely self conscious of this.  I would rather not smile in photos especially on days when I know it is worse than others. Not to fret!  I’m REALLY good at making silly faces!!!  Or simply not smiling at all…

Always calculating…always masking…

I love to laugh but I turn away, look down, cover my mouth or bite my lip most times to avoid looking weird.   (Which ironically probably looks even more weird!).

Always calculating…always masking…

I’ll never forget the time I realized other people do notice the awkward contorted “smile”…  My dear friend was singing happy birthday to me and I was smiling!  I really was! But afterwards, she gave me a huge hug because she thought I was trying not to cry.  My contorted smile didn’t look happy, it made me look sad!  Ugh. Anyhow…I’ll stick to tiny smirks and silly faces…or slightly turning sideways to try to mask that droopy side of my mouth.

I do smile a lot! I just avoid memorializing it in a photo…

My right eye is also droopier than my left.  Again, when I get tired, it is worse and more noticeable.  This has been most noticeable since my early 20s.  I prefer to wear sunglasses in most photos taken of me… Or of course, I can make a silly face and make my eyes as wide as I can!  Again, I’d rather memorialize a ridiculous looking face than be staring at my droopy eye…

Always calculating…always masking… (You see a trend here?)

That is my all time favorite face.  Rubber band lips!  Lol!

This photo above is significant to me.  It artistically portrays my deep insecurity and desire to hide the side of my face that droops. When I took this photo I purposefully darkened the shadows around that side of my face to mask my eye. I love the artistic value of the pictire, but now you know it goes much much deeper than just a thoughtful black and white photo…

A smile and silly faces…

Sunglasses!  But a decent smile…yet I’m purposefully posed with my cheek on my daughter’s head to help prop up that cheek so the smile isn’t as droopy…

Always calculating.  Always masking…

Here: partially unmasked… The photo above shows my unmasked crooked smile on a decent day.  It’s worse when I’m really tired…  I suppose to most people it isn’t that bad.  But to me, it feels like a giant red flag… I was able to bare that crooked smile but not my eyes in the same picture.  I don’t feel good looking at pics with my smile and eyes like that.

Always calculating…always masking…


Fluctuating muscle weakness

Difficulty breathing

Abnormal Gait

Abnormal EMG and muscle biopsy results

Genetic testing


One thought on “Signs & Symptoms

  1. Pingback: Garbage Diagnosis | Sometimes I Am Weak But I Am Not Broken

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