Hi All,

I know that MG is associated with eyeLID ptosis, but has anyone ever had or heard of a documented case of MG with only eyebrow ptosis?

I saw my optometrist today and she says that I clearly have ptosis, but it is eyebrow NOT eyelid. She says that the muscles in my forehead are weak. They slide down pushing on my eyebrow causing ptosis. My eyes and eyelid muscles are fine. She says that this is caused by aging. She reviewed my photos and the first sign of it occurred in 1998. I was only 21 years old.

This does not seem like it would make an MG diagnosis any easier and yet I am struggling to come up with anything else that fits ALL of my other symptoms.

Thanks,
Lindie

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

I can get eyebrow ptosis and full one sided facial weakness that includes my eyelid and my eye ball rolling off to one side!

Most days I have some degree of eyebrow ptosis some days it gets really bad and it looks like I am trying to balance a hairy slug on my eyelid! LOL

So I can appreciate the whole droopy eyebrow thing. Mine didn't start until I was 33, I will be 37 shortly and still without a diagnosis. Although I have developed more neurological symptoms as in suspected gastroparesis (paralysis of the stomach), my previous neurologist insists there is nothing wrong with me. So my question to him is - is it normal to vomit undigested food from a meal 9 hours previously?

A neuro opthalmologist I have seen believes its MG but won't say it publically as he works in a world leading centre, where the world leading expert - his boss, says it isn't.

Fun isn't it!

Rach

Rach,

I'm am so sorry to hear that you are on the same roller coaster nightmare that I am on. As far as the lack of MG diagnosis for you so far, what testing have you had? Have you had the SFEMG yet? Who is exactly is the world leading expert? And whose to say that he isn't wrong?

I'm so tired of the arrogance of these doctors. "Expert" or not, they don't know everything about medicine and they can in fact be wrong sometimes.

This is so frustrating!!! I totally feel your pain.

Lindie

Ditto, Lindie. I don't think it says under the job description of doctors that their main objective is to throw their hands in the air or "First Do Nothing."

Rach, I'm sorry your situation has not improved. I hate that you are not getting sufficient help.

Lindie, If an MG expert won't look at photos, they don't deserve the title of "MG expert," in my opinion.

Fatigable muscle weakness is NOT normal, no matter what the cause is. Shame on your optometrist for acting like a neuro-ophthalmologist or a neurologist.

And 33 was old back in the Middle ages but not now!!! There is no way that your symptoms can be chalked up to old age. That's ludicrous.

Can you do a post saying where you live, in case someone knows of a neuro who is nice and will see you no matter what?

I'm really sorry you aren't getting good help either. I can't stand how patients are treated.

Annie

Hello , sorry to hear you have the eyebrow trouble, but since July last year I have been experiencing something similar to you- on top of my right eyebrow. It looked -quoting my neurologist- as I had a bottox injection in the wrong place.

I thought it might go away, but it didn't and three days ago my left eyelid dropped. I m 35 years of age and I hate mirrors (used to be quite good looking, forgive my lack of modesty), my life will never be again.
So I understand your pain, hopefully your ilness will stop here , but be prepared for other tricks on your face.

So to make fun of the situation one eye doesn t shut and one doesn t open...

One thing , both stories happened after episodes of upset ,some trivial family discussions.....One advice than... avoid any stress.

As about doctors...Without being disrespectfull to anyone, mine promissed last year I would never have eyelid ptosis -...no comments

You are your best doctor, you know your body better than anyone else, hopefully your problem will be solved in time!

I never really thought about facial problems until quite recently, most of my weakness seemed to be from my neck to my knees, or so I thought. Thinking back I was having some facial weakness for quite some time. When my sister would come in from work she would ask me what was wrong, I would say nothing why are you asking, she would always say the same thing "You look like your mad at something or someone" We would just shake it off, we know now that was not the case at all. I have facial weakness quite frequently, almost never in my eyelids though.
It can be pretty frustrating between arm, hand, and facial weakness I couldn't even tweeze my own eyebrows anymore (LADIES, YOU UNDERSTAND), I went and got them threaded yesterday, it was the first time my eyebrows were the same in several months, I can't tell you how excited that made me!!!!! Pampering yourself can be such a mood lifter.

So keep smiling everybody, even if it is a little crooked ;D