Quote:
Originally Posted by AnnieB3
Hi, Angell. I'm sorry you have MG, but it is manageable. You need to understand how MG works, though.
|
First of all Annie, thank you for such a well thought out, and thoughtful post.
Quote:
Originally Posted by AnnieB3
Too much Mestinon, however, can cause too much build up of ACh and we can have side effects of the drug such as increased saliva and sweating (which you mentioned). An MGer can also go into a cholinergic crisis, which can be life threatening.
|
*nods* Last night I was drowning in a puddle of saliva on my pillow that built up faster than it could be absorbed - and faster than l could get into stage 2 sleep.
Quote:
Originally Posted by AnnieB3
Mestinon kicks in after about 1/2 hour. Two hours after that, it wears off. So there is about 2 out of 3 hours when you have Mestinon at full effectiveness. DO NOT take it sooner.
|
I am taking it as directed, not based on symptoms - so look, I did something right! lol
Quote:
Originally Posted by AnnieB3
CAUTION: Do not play around with dosing without speaking to your prescribing neurologist first. You could end up in a crisis!
So many MGers I know don't need a clock to know when they need Mestinon, even though I still write down every dose I take. I feel weaker when Mestinon wears off (a half an hour or more before I can take more). And I will feel stronger a half an hour later.
|
Increasing my dosage is, for the moment, just following doctors orders but, and this seems like a big but to me: I have far felt no difference re: strength within the 2-3 hour window any other window. Getting up and doing the dishes (for instance) takes just as much effort a half hour after a dose as it does six hours after a dose.
Quote:
Originally Posted by AnnieB3
This sounds weird, but listen to your body and not your brain.  It takes some time to "feel" when muscles are stronger. Give yourself time to get used to all of this. And putting a percentage on relief can fool you in the beginning of this disease. It's not about math, it's about how you feel. |
I'm a mathematician - it's always about the math.
j/k, okay - I hear you.
Quote:
Originally Posted by AnnieB3
And perception can fool you. You can become weak so slowly that you might not notice that you are doing badly. If you become weak quickly, that's easy to notice.
|
Not an issue (slowly). Even before meds it went something like this: Figure out how to stand up - go outside - work till drool is running down my chin, I'm slurring my words and I'm stumbling around like a drunk on Friday night after the bars close. Usually I've got about an hour.
Quote:
Originally Posted by AnnieB3
I'm sorry if this sounds brutal, but you won't ever feel "normal" again, unless you go into remission.
|
Thanks for being blunt. And really, I'm okay with that - it's just my body after all. I am not my body though it is useful to get around.
Quote:
Originally Posted by AnnieB3
It's really hard to get used to the fact that your life will need a new normal. It might be the one reason why so many newly diagnosed MGers have a myasthenic crisis. They want their old life so badly that they push too hard.
|
I do have a tendency to push too hard, but I think it's a personality characteristic rather than a resistance to what is.
Quote:
Originally Posted by AnnieB3
You do NOT want a myasthenic or cholinergic crisis. They are damn scary. What would that feel like? Well, if you can't move well, breathe well, or can't swallow, or are generally very weak, that's an MG crisis. At that point, you need to dial 911, because you cannot tell how quickly MG will tank or how severe the weakness will get.
|
I'm pretty sure I've had at least a few of these crisis's before diagnosis. They are not fun, you're right.
Quote:
Originally Posted by AnnieB3
We all know how frustrating this disease can be, however, we all also know that there are treatment options to help. And we know that a new normal does not necessarily mean a reduced quality of life! But you have to be smart about how you manage MG!!!
|
To tell you the truth, the most frustrating thing is not knowing what this new normal is supposed to look like so I can aim. Or figuring out how to manage it without cryptic conversations that go like:
Increase dosage until you get the desired effect.
What's the desired effect?
It's different for everyone.
ah-huh... what??
Quote:
Originally Posted by AnnieB3
If you think you can do what you could on a daily basis before you got MG on ONLY Mestinon, well, you can't.  I'm sorry, but that's the truth. |
No problem, I can live with that.
Quote:
Originally Posted by AnnieB3
You should probably make an appointment with your neurologist to discuss all treatment options. Only you can decide what will work best for you.
|
I am awaiting a cat scan (tomorrow) to check for tumors and then the neurologist is going to call me to set up another appointment.
Quote:
Originally Posted by AnnieB3
What else can we do to help? We all know how overwhelming this can be. And there is a LOT to learn about MG, such as the fact that some drugs can make it worse, too.
|
So you're saying that I should stop taking the Z-pac? j/k - not taking it.
You've done me a great service with this response already and I'm very grateful. I guess having some idea - any idea, of what to feel for when I'm 'feeling' that my muscles are stronger...because I don't feel anything but weakness all the time. There is never a time, for instance, that I say, "I totally have the energy to go do the dishes right now." It's more like, "Okay, time to suck it up and go do it anyway.
Quote:
Originally Posted by AnnieB3
I'm not recommending anything, but it seems to me that you are taking too high of a dose and having side effects and, possibly, overdose symptoms. Please read the PDF below.
|
I have made the decision to back off to 60mg until I see my neurologist next week. Again, thank you so very much for the time you've spent trying to help me.