Shorty after becoming diagnosed with MG, I was diagnosed with depression. I had never had depression before, so I simply assumed it was the effects of the MG. The MG was new, I had no idea what to expect, and was given very little information as I left my neurologists office except 'don't push yourself'. While not bad advice, it turns out that was perfect advice for nurturing depression. I didn't have the strength to get up and do anything, so I gave in to it and didn't.

Anyway, once I realized what was happening, I pulled myself out of my depression, got up and found a new normal. But the MG has taken a turn for the worse recently and frankly, that's a little depressing. Too, I realize that I have absolutely no idea how to tell the difference between the MG and the depression until I get to a dangerous place with either.

Anyone else had to deal with this? Any suggestions?

i'm sorry your feeling this way.. I personally think that it's "normal" to be depressed about the whole situation.. It's a hard situation to be in, and most of the time friends and family just can't understand how it feels for us to be in a body that feels like it's no longer ours.. And yes, I think sitting around not having an active lifestyle makes it worse.. I used to be a runner, so when I had stress, I would go run, ski, surf etc etc.. I of course now can't do any of that at all.. and have more stress on my plate than I ever did back when I had my old body.. It's a mourning of what we used to have.. however, I just try to tell myself how lucky we are that there are treatments.. unlike things like ALS , we have options and treatments.. we aren't our old selves.. but I try to accept this new normal and be thankful for what it is.
That being said, if it feels like a depression that you are deep in, then definitely talk to your doctor and see if something they can do to help as well.. and/or therapy .

Angell, There's also a physical reason for depression. Beware, even these studies are depressing!

http://www.yalescientific.org/2013/0...of-depression/

https://bbrfoundation.org/discoverie...narsad-grantee

http://www.ncbi.nlm.nih.gov/books/NBK28139/

http://www.livestrong.com/article/47...in-depression/

So, the less acetylcholine we have, the less depressed we are. But the less acetylcholine we have, the less active we are and more depressed we are. We take Mestinon, have more acetylcholine, and are more prone to depression.

Geez that's depressing!

For me, there's nothing worse than not being able to do things; to help people; and to feel as though I have something to contribute. Most days I can only take care of myself and my dog, barely making it through the day.

Watching your life implode due to a disease is something only someone with that disease can understand. And healthy people don't really want to think, let alone hear, about how depressing it is to be sick.

We shouldn't be defined by what we can do, but by who we are. However, that just isn't enough, is it? Do we base our value as a human being on what we used to be able to do or by our character—or do we base it on how we handle what's thrown at us? Or are those expectations that we can just let go of?

Every single day is a challenge. That's why you need to set yourself up for success.

If you don't feel good, use paper plates for dinner. Say good morning to the earth every day, so that you feel connected to the world. Play your favorite music when you start to feel blue, which takes nearly no energy. Surround yourself with colors that make you feel good.

Throw away expectations (including those that others put upon you). Welcome what each day brings and just do your best. That also means letting go of many of the "traditions" people think we "should" do, such as buying gifts or cooking elaborate meals or whatever.

It's okay to be minimalistic.

Meditating is a great thing to do to up your mood. There are so many things like that you can do to "throw away" depression.

It's just very hard to do it when you have an acetylcholine disease, because of the above depressing biochemical facts. And the fact that antidepressants are often bad for MG.

It helps to celebrate even the smallest victory every day. Woohoo, I Swiffered! I made a meal without needing to sit. I know, sounds utterly pathetic, right?

But perception is such a powerful tool. When you decide that those small accomplishments matter, you feel better. When you can do a small thing for others, think of what that means to their life.

My life might be a veritable train wreck, but it's my little train wreck of a life and I decide whether that's good or bad, not anyone else!

I'm babbling.

If you're sad, cry. If you're frustrated, scream. Go ahead and get those feelings out. Then look around you. What can you do to make your world better?

No, it's not easy to live with MG. And I am going to demand answers after I die as to why my life had to be so da#@ hard. But while I'm here, I'm not going to let this ridiculously challenging disease ruin my day.

But that's just my take on it.

Angell, I'm sorry you're depressed right now. It plain sucks. Try to reinvent your life. No, MG will never be easy to live with, unless you're in remission, but that doesn't mean that you can't enjoy a few moments of happiness each day.


Annie

Wow, fascinating reading. So Acetylcholine is implicated in depression. How easy is it for the acetylcholine to wander around from the brain to the body?

This could be useful data next time my GP starts on about how I MUST be depressed, because I am inactive. No doctor, too little acetylcholine, explains why I am inactive and NOT depressed.

Hi folks and thank you for all the understanding and informative responses. That said, I knew as soon as I hit 'submit post' that I missed the mark a bit, but had run out of steam to correct it and hoped for the best. Here's a bit better phrased question around a typical scenario:

I feel as if I don't have the strength to stand up and go check the mailbox, make lunch or do the dishes.

How do I determine if this is the MG, which I should give in to and allow to limit me - or the depression, which I should not give in to and allow to limit me?

To me, they feel the same - and so I second guess every attempt to curb my activity, feel guilt and uncertainty when I allow it to stop me - wondering if it is just mental, and feel guilt and uncertainty when I don't allow it to stop me - wondering if it's physical this time and I'm playing with my life.

If feel confident that if I had some kind of litmus test I could get beyond the self doubt and accept whatever the outcome is.

Angel, well asked question, I have been pondering this very same thing.
I really look forward to insight from others as I am too new to speak from experiences.

Yay!

It's not even that I am depressed - it came, it saw and I conquered, but aware of it's potential now, and trying to mount an effective defense against its return is challenging.

I'm sorry that you are dealing with this as well Lily, but it is nice to have someone who understands. Never before have I felt like such an ineffectual partner in my health care - there are so many physical issues alone, that I often don't know whether to call my neurologist of primary when something goes wrong.

I left my neurologists office on Thursday with more questions than I started with. I was so focused on making certain that I remembered to tell him everything that had been going on, and predicating every new listing with, "I don't know if this is related but..." that I missed the fact, until after I was gone, that when he said, "It appears that your MG has worsened." it didn't actually let me know if every symptom I had was MG related or if I should make an appointment with my primary to discuss those symptoms (if there were any) that had nothing to do with the MG.

For instance, I go out every morning to help my wife feed the horses. There is a safety feature on the tractor and it shuts off if one's butt it not firmly planted on the seat. She can't reach the pedals without her butt coming off the seat and so she can't drive it. I have boots that are rated for 40 below zero and wear wool socks, but an hour outside and I am suffering from frostbite on my toes - and it's twenty above. This is new, still don't know if it's an MG related problem or something else.

Anyway, we'll wait together to see what folks have to say about the mental vs physical quandary.

While I'm rambling, another aspect of this disease that is causing me a fair bit of consternation as I try to figure out how to take an active role in my own care is this:

Thursday my neurologist put me back on Mestinon. I haven't been on it for well over a year because I began overdosing long before I reached a therapeutic dose. Adding prednisone failed to help - anything over 30 mg and and within thirty minutes it is vacating my body one way or the other. However, with the sudden deterioration, he thinks it might be worth trying again. Anyway, he told me to call his nurse in a few days and tell her if it was helping.

Today is my first day back on it - the pharmacy has to order it and I couldn't fill the prescription until last night. After fifteen very poor days, Sunday and Monday I felt somewhat better - not good, but better. Last night I was in bed by 6:30pm for the night and was down for eleven hours - quite unusual, despite the irregularity of my sleep. So now it's Tuesday, I began Mestinon...is it helping?

Sunday and Monday were better days - I feel about the same. Maybe...maybe a tiny bit stronger, but I also was in bed for eleven hours last night. Mestinon or sleep? Mestinon or I'm in a better cycle that started three days ago? Mestinon or...? How on earth can you tell when every day is a spin on the wheel and where it lands is anyone's guess?

I wouldn't be so confounded if he had asked me to call in a month or so - take an average of the days and compare it to an average day from last month...but a couple of days seems impossible. Do you folks get that much relief or help from Mestinon?

Duh, guess I should've answered that, too! I tend to wax on about depression, especially because it's a very difficult thing to deal with when you often can't move enough to get oxytocin and endorphins to kick in.

If your eyelids, eyebrows, and the rest of your face droop, that can be a good "barometer" of how the rest of your body is doing. For some people, it isn't, but for many of us, when our faces droop, it's a big sign that the rest of the body is weaker.

Just before I was admitted for my crisis, the urgent care doctor told me that I wasn't able to squeeze his fingers at all. And I thought I was squeezing them really hard.

It can be hard to notice a change in weakness, especially when it comes on slowly. So you have to know what your "normal" MG is.

I'm typing this and my arms are weak. That's one of my signs that I'm doing worse than usual. Others, besides the face melting off sensation, are just feeling sluggish (physical, not emotional), I choke more than usual if those muscles are weaker, I want to sleep more, I trip on the floor (not picking my feet up as well), I can't hold my head up as well, etc.

I also get muscle cramps when I'm doing a lot worse, and it takes less activity to get to that point as well. My entire abdomen and back went into spasm a few days before my crisis.

I also go by my oximeter. I check it before and after taking Mestinon. No, not every day or even that often. I do it when I feel worse. I know what my normal oximetry is and evaluate accordingly. Before my crisis, my O2 was barely 94% while awake. I knew I was doing worse in general.

O2 gets worse while sleeping, because our/everyone's muscles get weaker while sleeping. When I get up in the middle of the night, I know when I'm not doing well because my O2 drops down to 86 - 88% (while awake). It slowly goes up from there after resting on the bed for a bit.

If you do get worse, you know where you should be! There's not way to tell how quickly we will get weaker or how bad that will get.

How bad you get on a regular basis depends on so many factors. How well did you sleep the night before? How long did an activity go on? Did you get overheated while doing it? Are you stressed out? Did you just do dishes (a few muscles used) or socialize (more muscles used)?

When you break MG down, it's really complex. So many factors can makes worse.

So, start by knowing your normal (of all basic muscle group areas) MG AND your normal depression.

Then try to gauge how much worse you are by doing an activity with those muscles (i.e., squeezing someone's fingers!).

Realize that MG is not as simple as an algorithm and that it can get worse 1 - 2 days after doing an activity and that effects can be cumulative.

Call your neuro and/or pulmonologist, or go to the hospital if you suspect you are getting worse or on the verge of a crisis.

Does that help?

Depression is emotional but can have physical effects, however, depression is not fatigable.

When you're depressed, you may want to sleep. MG, however, will put you to sleep when you're weaker—no choice in the matter.

They're not the same animal, so get to know the parts of each and how they effect you!


Annie

Mestinon helps more when I'm stronger, less when I'm weaker. I up my dose (per my neuro) when I get worse or take it sooner (every 2-1/2 hours instead of 3). Or take a nap.