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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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06-01-2013, 08:22 AM | #1 | ||
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Junior Member
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Hi everyone - just a quick question...I Promise! In my search for answers I spoke to a Myasthenia Specialist Nurse over the phone to see what her opinion was on my symptoms - she was lovely but said my one sided facial droop is not a typical/classic presentation of MG she said its unusual to only have one side affected? This puzzled me as I've seen the "Myasthenia Snarl" pictures and they seem one sided?? I have sent her some pictures and she said there are unusual cases but I just wondered what your experiences/views in this are??
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06-01-2013, 09:30 AM | #2 | |||
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I think that she is wrong. A lot of mg symptoms are one sided.
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Celeste |
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06-01-2013, 10:02 AM | #3 | ||
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that nurse was wrong about the presentation, but right about the medical part.
I ask my neuro once why my right side was always the droopy face side and why my right arm was the always the one get heavy. Her answer was that a person's dominant side (right Handed for me) can often be most dramatically impacted. But she also said it would be a mistake to think that MG was ONLY weakening one side. She said to think of my right side as my early warning system!! |
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06-01-2013, 10:07 AM | #4 | ||
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Hello Unsure, I think you have really good listening skills to be able to report the Nurse's opinion, as you did. That's not easy. I wasn't there, so I can't speak to her tone, and tone is incredibly important. Initially, it's difficult for MGers to get the lingo (word usage) so I will highlight her comments:
"...one sided facial droop is not a typical/classic presentation of MG..." "...unusual to only have one side affected..." "...she said there are unusual cases..." Unusual simply means it's in the lower percentage. So she's saying it's not common, but it does happen. |
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06-01-2013, 01:04 PM | #5 | ||
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Thanks everyone for your replies. I completely agree Fortunatos, I'm sorry if my question seemed like I was saying she dismissed it as not being a possibility, that wasn't my intention - I was just surprised that one sided facial droop isn't classed as being a classic/typical presentation and more an unusual case/presentation. The impression I had from the research I have done is that it seemed a common complaint along with what I have read about other's experiences here and the illustration of the Myasthenic Snarl. I suppose I was really questioning my interpretation of what I have read and whether I was just relating it to my symptoms.....as I am no doubt a little biased by them? I question myself a lot - like whether my weakness is just my perception or really a muscle weakness? Drooping eyelid and mouth say to me it is a weakness along with my bad posture compensating for trying to keep my head/neck up and the way my legs shake when I lift them and the waddle/limp I have going on! I'm just annoying like that....I annoy myself! haha.
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06-01-2013, 01:17 PM | #6 | |||
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I think the one-sidedness is more typical. My right side droops, I am right handed. I try to smile and can watch my right corner lip turn from up to head to my chin in seconds. My right eye has ptsosis, and I have dimples now only on my left side. It freaks me out when I look in the mirror. My teenage daughters recommendation - "don't smile, Mom".
kathie |
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"Thanks for this!" says: | Fortunatos (06-01-2013) |
06-01-2013, 06:09 PM | #7 | ||
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Unsure said, "...Fortunatos, I'm sorry if my question seemed like I was saying she dismissed it as not being a possibility..."
Unsure, Oh dear, I understood clearly what you were saying! I was attempting to roughly interpret "her" words. My guess is that she was saying there is a difference between the generalization, "one-sided facial droop" and the "Myasthenic Snarl." Good! Then you will be so armed with information, you can annoy the neurologists, like I did. Gosh I miss that.... |
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