I've actually never seen an eye doctor. I should prolly get on that...

*randomly separated some paragraphs for people with DV.*

Alice,

Isn't it amazing the doubts we can have about our own bodies? I've had hand weakness for years and years, and knew on some level that it wasn't normal, but also knew that it was so strange, and so hard to describe at times, that I was sure I wouldn't be believed about it...

I remember that the sensitivity to light started around the same time as the weak hands. I remember early mornings, walking to the bus stop, and being embarassed because my eyes were going completely deranged from the sunlight...I'd get on the bus, with my head down, hoping no one would notice that my eyelid and eyeball were like totally not behaving...

It would always clear up, though, sooner than later, but I felt tired at this time too, fatigued...It was also around this time that people around me would complain because I'd always chew with my mouth open...I'd try to chew with my mouth closed, but I seriously could not...It seemed like there wasn't enough space in my mouth or something...I felt 'uncouthe,' but I'd explain

that for some reason, it was just impossible for me to do it...I tried to limit public eating as much as possible...Would tend to spill food on my shirt...I really internalized this...I didn't think of this as a disability, I just have always felt that I was very odd, or 'special' but not in such a good way...lol

I think that in many ways, this is why I'm so fascinated/semi-obsessed with this illness at this point in my life (although I hope to close this chapter soon as I'm ready to). Not just because my current sx have interfered with my life in such a big way, but because since finally finding out what the heck was wrong, I've been able to say to myself, "it's not your fault- you're not insane.

You're not a loser or a weirdo. You're sick and you know that now, and you're going to be okay because of that." I know that might sound kinda lame, or kinda tv-movieish or cheesy, but my self-esteem has been so affected by being ill for so long and blaming it on some innate imperfection, that finally

having a reason has freed me and allowed me to trust me again, trust my instincts, listen to my body, respect my body. It has been plaguing me for so many years, so insidiously, but I've identified it, and it can't wreak havoc without a face anymore.

Sorry that I hijacked this thread.

Nicky,

I can tell you as a physician, that many times people that become ill, become insecure about themselves and are not sure what is going on.

our body and mind are non-seperable. it is only in the modern world that this seperation exists. we try to seperate between what is wrong with our body to what is wrong with our soul, but in fact we are one organism, and when something goes wrong, it leads to an inevitalbe cascade of events, and as a first step of trying to recover/ correct it, we try to make some sense of it.

people that are ill, go to their physician, because they want him/her to help them understand what is wrong and find the way to correct it, without causing more damage.

one of my criticism against many neurologists (I will not say all), is that they manage to do the exact opposite, they make you more confused and more insecure. it was my neuorlogist (at that time) that clearly told me (without any doubt) that my occular symptoms are not myasthenic, and sent me searching for the psychological reason for them.

in stead of helping me to put some order in what was going on, help me regain my trust in myself and my abilities, help me find ways to overcome this dissability, he made me much more confused and insecure. he made me doubt my clinical skills, he made me ask myself why I was having emotional problems in dealing with my patient's diagnoses. why couldn't I see their bone marrow, why did I become so short of breath when going to their room in the hospital, that I could hardly talk with them or make any reasoable clinical decissions?

fortunatley, I found an excellent psychologist, who told me after a few sessions, that I would be the last one she would think would have such problems. but, even this did not help me figure out the source of the problem.
I was not sure who was right- the neuorlogist who clearly told me that my very mild MG, could not explain any of my symptoms, or the psychologists/ psychiatrists and even pulmonologists that thought I had a serious illness.

only a few years later, when I had some "theoretical" E-mail discussions with him (and with a few more experts), did I realize that this neuorlogist thought so, because I had a normal SFEMG, and in his (idiotic) oppinion, you can't have significant myasthenic weakness with a normal SFEMG.

just like another world leading expert, thought I was in "remission" because my SFEMG was completely normal, at the time that I had symptoms consistent with a myasthenic crisis.

in any case, it is completely normal not to understand what is happening to our body initially, and it is completley normal to search for the right explanation, and try to correct it, or adjust to it, in the best possible way that we can.

sorry that I continued with the "hijack", but I guess we all start a topic and it ends up being connected to many other things, that may have not been the initial reason to discuss it.

alice

I get the twitchy eye thing too! Its usually my left upper lid and it is very annoying!

For me its a warning sign that Im going to develop either ptosis (which for me is usually my right eye and eyebrow, with sometimes the left eye joining in for fun!) or that Im going to have a bout of nystagmus - which means bed for me until it settles as it me makes me feel violently sick.

What confuses me though is why its my left eye that twitches yet the right eye that shuts? But then what part of MG actually makes sense?

As to Drs making you feel confused and scared.........there isn't enough room in this forum for what I would like to say! And most of that would have to be heavily censored due to the language involved!

Love
Rach

Rach -

I'm so glad you said that about the left / right eye thing - - - cuz that's exactly what's going on with me right now! And it makes NO sense!!!

To all -
Thx for responses. I tried shortening the time between doses by 1 hour (keeping dose constant), and it has made a huge difference for the better. Will experiment a bit with neuro's blessing to see if I just need to up the dosage and return to 4 hours - or keep dosage and move to 3 hour intervals.

Nicky / Alice
Your observations are so on target. Just like our MG - who knows where our threads will 'morph'. We mg'ers are nothing if not creative and flexible!!! lol

I still keep thinking I can 'will' myself to conquer this -- and it's wearig me out!! So I especially appreciated your postings.

Sue

Exactly how my double vision started, in fact that is how my MG started...

Now that I have had MG for about 9 months (I think?) when my eyes feel this way it is because either:
1- Too much Mestinon (usual cause)
2- Not enough Mestinon
3- Too much stress or activity

When my eyes feel twitchy from too much Mestinon, it usually starts about 20 minutes after I take Mestinon and lasts for at least an hour and then slowly fades.

If stress causes my eyes to twitch it happens immediately as I experience stress. I have no tolerance for stressful situations, even small amounts of stress. If I don't relax within about 5 minutes, my MG symptoms progress into extreme weakness which is scary.

Twitchy eyes seem to be my first sign that I need to take some kind of action so I don't get worse symptoms.

I hope your eyes are feeling better.

hey, Nicknerd; i recently found out that electronically anti flicker glasses can be made. they're based on ferroelectic liquid cristals and cyclically counter flicker from discharge tubes...

take care.