Thanks much for sharing your ptosis symptoms Kathie!

I also got a really strange sensation at base of skull back again which might hang together – with this or it might not. Also my son has double vision and intermittent ptosis which has us all even more confused.

Will be good to get to first neuro appointment but don´t expect they will know more than you guys do !

Anacrusis I know they say MG is not inherited but my mom and 2 of her sisters had it plus I think my sister has MG.
Mike

I think that the tendency to get ANYTHING is genetic. Even stuff that is caused by a specific organism will be more apt to get you if you have the right genetics. Also, there is not much known about it.

My cardiac arrhythmia problem that I had was said to not be inherited. My grandfather had it. My mother and all my sisters had it. I had it. I found out years after the fact that my first cousin had it. My daughter has it. We were all treated with ablations and are doing much better. My point is, it is genetic.

as you know, i'm not a confirmed MG diagnosis, but my symptoms started with my eyelids.. and then shortly thereafter my entire face.... I remember at one point my face felt funny.. and I looked in the mirror and thought I may have had a stroke (my right side is more affected than left)... after a few weeks or months (it's all a blur) of having symptoms- it was then generalized.. i was so upset by it all and dr's telling me it was stress (ugh).. that I was wiped out one night and started to cry.. only that my face wouldn't even make the "cry face"!!!! which upset me even more haha.. when my symptoms are at a flare, i have this ugly snarl even when I'm smiling or laughing hard, and I used to have a quite animated face!!!

On another note- cooler weather is on it's way here - yesterday (3 days post IVIG) I woke up breathing my easier.. and we were outside at a fair all day- once we got home and my husband was talking about how exhausted he was, and i was feeling great - i realized.. hey no double vision all day, my eyelids weren't droopy and I smiled all day without that tired muscle feeling and fr the first time in months no melting face in the weather!! YAY for fall!!!

Mike
Thinking back could there have been anything that your mom, her sisters, you and your sister could have all been exposed to that could have caused it? If not that is really amazing dont you think?

That is not possible. My sister and I have been apart almost all our lives and the same can be said of Moms sisters.
Mike

Here is my BIG pre-neuro appointment question for the day:

I can relate to just about all the symptoms I have read through on this forum the last 3 months. Someone here has already suggested looking into environmental toxicity.

IF that were to be the culprit then might the following be true about environmental toxicity?

1. Improves with Mestinon *
2. Fluctuating symptoms and remissions
3. Affects same sets of muscles as MG
4. Worsens with heat/improves with cold

We are doing some testing in the house. I´ve lived there for 20 years - also nothing ever happened until after I got pregnant/ got a virus/took antibiotics

* I don´t take Mestinon all the time but got really surprised it changed my vision so drastically with each dose taken.


I heard that congenital usually doesn´t respond to Mestinon which is what I use with good results. What you have is not congenital right? & if I remember correctly it took quite a while for your antibodies to´present themselves´.

Have you applied for that job at Mayo yet, Celeste?!

I know what you mean! Believe it or not where I live it was so chilly that we wore scarves and gloves one day last week and on those few days I felt so asymptomatic that I thought about leaving the forum!!!

Steph you always ask great questions for the good and enlightenment of all – Thank you

Anacrusis, forgive me if AT FIRST this doesn't SEEM like I'm answering your original post.

My first symptom was not being able to whistle. I told my dentist and my GP. They thought it was TMJ. My mouth felt "funny" -- sort of numb at times -- sort of "tingly" at other times. I did a lot of research on the internet. I could never find anything that related to MG. When I was FINALLY referred to a neuro (after about 2 years), he didn't think my symptoms sounded at all like MG -- he suspected a brain tumor or stroke -- but, he ran the MG panel anyway. It turns out that I was POSITIVE to blocking, binding, AND modulating antibodies!!

So, in relating this TO your original post......I think that BECAUSE MG is so rare, there are just things about this disorder that are still unknown. I have SINCE noticed that when my eyes are "wonky", the muscles DO feel numbish -- and when my legs and arms are misbehaving, they, too, feel like the nerves aren't "connected" (if this makes sense). So, just make note of your symptoms. And don't be surprised if a neuro hasn't yet heard of them. I suspect that mine (both of them) have learned a few things from me. (They are good guys!)

Oh, I have the "snarl", too -- a Halloween mask without the expense.

Another thought. My sister went to one of the nations "leading experts" on MG and told her that her "snarl" and sagging face on one side had nothing to do with MG. He told her that even though she had positive modulating antibodies she did not have MG because her single fiber test was not conclusive. Even though in his book he states that a Neg single fiber test does not mean you don't have MG. So this leading expert says one thing and prints another.
Mike