Quote:
Originally Posted by AnnieB3
Lindie, Any muscle can be affected by MG and there are 640 skeletal muscles. My eyebrows droop. My entire face can droop. Have you tried taking photos of your face?
The thing about looking at someone's face is that a doctor may catch you on a day when you have eyelid ptosis or they may not. It's not like when you show up at a doctor's office that there will be this perfect set of clinical signs of MG.  Weakness that is variable is the hallmark of this damn disease and that's why a good doctor will look at/test several muscle groups during a visit.
Have you been seen by a neuro-ophthalmologist, I can't remember.
Do you have any K-12 photos? Mine clearly show that I have had both eyelid and eyebrow ptosis since birth.
Evidence of muscle weakness does not confuse the idea of MG, it would only add to the pile of evidence.
Aging, really? How old are you? I know people who are old and don't have their foreheads or eyebrows drooping. What a crock. Yes, people can lose acetylcholine as they get older BUT if the weakness is fatigable, chances are that it's MG or something like that.
Is it time for a 2nd opinion?
Take some photos. You'd be amazed at what doctors miss by "looking."
Annie |
Hi Annie,
Thanks for your response. Yes, I took photos. That's what the optometrist used to diagnose my eyebrow ptosis. My MG "expert", however, would not look a the photos. Yes, I have K-12 photos and I brought them in as well. Again, my optometrist looked at them, but the MG "expert" wouldn't. I didn't have this eyebrow ptosis until 1998. I was 21 years old. I am 33 years old now.
The eyebrow ptosis shows up dramatically when I am tired. The optometrist said that this was normal. I haven't seen a neuro-ophthalmologist. My optometrist says that neurologically my eyes are fine and my eyelid muscles are fine.
I would love to get a 2nd opinion, especially, from another MG "expert". The problem is that I can't seem to get into see another one. They all want a referral and medical records. The problem is that despite my symptoms, all the negative tests and this MG "expert's" opinion is making it so that no other MG doctor has been willing to see me.
I just don't know where to go from here.
Lindie