I am currently very depressed about my situation and feel like my life is over (I think if I didn't have kids to take care of I would have no desire to live at all right now).

I know exactly how you feel. In fact I would even say that if it weren't for my kids chances are I wouldn't be here right now. At the end of the day, I always realized that I couldn't bring that kind of pain on my kids so I've made myself go on.

Still, I think with treatment (and I have been without a diagnosis or treatment for 8 years) things can improve dramatically for both of us. I'm a firm believer in the little things making life beautiful and worth living. Unfortunately, it's the little things - a walk in the woods (or desert ), lunch and a good laugh with a close friend, that are denied to us. Also, like everyone here, I love taking care of my family, I love the sense of accomplishment I get when I DO something - whether it's making cookies for my kids or getting a master's degree, it just feels so good. It's hard to try to find a way to live without all that. Sometimes of course I get to do those things, but too often not.

So, I understand what you're saying. I really do. I also have hope that your life will be better but - I know from years of pushing myself through this exhaustion and weakness trying to get a degree so I can get a job and take care of my family that you reach a point where you just can't do it anymore. And I am the queen of willpower! Sounds like you're pretty tough too. What I'm saying is that if you need to pursue disability, then do it. Don't take no for an answer until you've tried everything. I don't think people understand what agony it is for those who are sick to have to push through every single minute of every day. It's awful. Do what you have to do to stay sane, and take whatever medications can help you (within your comfort zone). Don't give up, people do get better, people do get disability, people do get help.

Ally

Thank you Ally...thank you for your response

I am going to see my Dr next week for a checkup and I am going to mention disability again to him, not because I can't work, but because between working and the stress from other issues in my life I feel like I am going to overdo it. I feel like everything is going to fall apart because I just can't keep up with it all (even though again, I can work as the doctor said I would be able to. But he doesn't realize that work is not LIFE) I have a huge amount of stress in my life that I can't make go away. The combination of stress, MG and working is just too much!.

Thinking of disability makes me sad, I don't feel good about having other people help me, I want to be able to take care of myself. I keep trying to think of other ways I can contribute.

I feel so bad about myself right now.

But I am trying to make it all better, or at least tolerable... I want to do more than just be alive, I want to LIVE! I think I can have a happy life if I remove one of the three energy-stealers from my life...the stress is not going away, MG is not going away...but maybe work can. Need to think on this subject more.

Hey hon! I think it is a GREAT idea to get some much needed rest and focus on YOU!

There are lots of ways you can contribute! Just being there for others is HUGE! You have such a big heart and have given much needed HOPE to others - that in and of itself is HUGE!

There is NOTHING wrong with having someone take care of YOU right now! You would help out someone else, so what is wrong with someone helping you? I struggle with guilt daily due to this stupid disease, but am learning to deal with it! My big idea of "help" is making gift baskets and talking with others about MG. It isn't much, but it helps!

Big hugs, honey!
Hope you feel better soon!

Love,
Erin

being physically dissabled and requiring the help of others, does not mean that you are dissabled, and can't contribute to the society you live in.

and work does not have to be all or none, and also can be modified, in ways that do not seem possible.

I am sure that you will eventually find the way that works best for you.

I have had times in which I truly thought that my life is over, and that there is no way in the world I am going to live like that.

it is not trivial to learn to live with this illness, which is in reality very far from the "pink" descriptions in the text-books.

But, I do think it is possible.

alice

Thanks for all your responses.

I don't even think about remission. I only think about what I am able to do every day and making sure I don't overdo things.

Disability for me is disability. I can't even do my two hours of errands once a week sometimes. Quality of life for me has meant an adjustment of the definition of it. Lately, I don't think I can even say there is more than a drop of it.

Annie

Dear Annie,

I hate to give medical advice to people in "cyberspace", because I think that even when a patient is in your office, you can take a full history, examine them, have all their medical paperes and test results in front of you, you can still go wrong, so obviously when you only have a glimpse, how can you really know?

more then that, neurology, and pulmonology are not in the realm of my expertise, and my knowledge is purely autodidactic, and based on the experience of one patient, that happens to be me, with all the limitations that go with that.

so, I may definitely be wrong, and it is OK if you tell me that what I am saying is complete BS and how can I know, but the way you describe your symptoms, sound to me like you have significant involvement of your respiratory muscles that very likely leads to CO2 retention.

if your O2 sats only are the only thing that is measured this can be easily missed, and it may appear that you are doing pretty well, when you are really not.

the reason I am saying this, is that if I look at what has helped me most, over the last two years, it was my respirator. it was given to me, in order to save my life, because I had reccurent and quite frequent episodes of acute respiratory failure, and could either "move" to the ER, or have some mode of respiratory assistance at home, and I was very fortunate that my pulmonologist thought of this option.

but, at some point I realized that I do not have to be in a life threatening situation in order to use it, and started using it "prophilactically" every time I started feeling "wiped out".

it took a while and a few encouters with some of the more arrogant memebers of my profession to get it properly adjusted . but, now I can really do so much more then before.

Thanks to that, I was gradully able to go back to work, and even go to an international conference to present the results of our research, and even get to do some sight seeing with my husband. when a few months ago, I could hardly even write and submit the abstract to that conference.

hope this is of some help,

alice

Alice: Could you explain some more about CO2 retention? For instance, what are the symptoms? Can it cause significant cognitive impairment? How long does it take to recover? How does someone know they have it?

Actually, would you mind terribly starting a new post on the topic?

Annie: I'm really worried about you. Being homebound STINKS. No wonder you're fighting depression. I do too when I can't get out. Geez, too bad you're so far away, we could be disabled together. Watch stupid movies and make fun of them. Look out the window and watch those beautiful birds of yours. Brainstorm horrible names to call that jerk of a neurologist who kept your test results from you. I'll bet we could think of some good ones!

Please take good care of yourself. Do you ever get remissions where you catch a break? If I remember correctly, you can't take immunosuppresants. Is that right? Do you feel like you're at the end of the road as far as medications go? IVIG? I'm sure you've explored everything (Annie being Annie ) but I'm just so frustrated for you.

Ally

Actually, my last readings from my chem panel showed my carbon dioxide at the bottom of the test range. I know, that can be bad too!

I'm only on Mestinon because I can't do the other drugs. So I have to manage my MG with rest. I'm not completely homebound but, yes, it is my "sanctuary." Don't worry, writing is my escape. If it weren't for my creative background, I probably would go bonkers.

Alice, I don't think what you are saying is BS. That's silly. I was only saying how it is for me. Oxygen won't help me, it'll make me worse. And I'm worn out by doctoring. My pulmy is awesome and I just saw her a month or so ago. My tests were fine. But like I said before, MG can be "fine" just sitting there in an office and when you take it out for a spin, it likes to turn on you.

Thanks, Ally. It would be great to sit down with you and lots of people here and giggle ourselves silly. WITH oxygen. Thanks.

Oh, they can test for CO2 with a blood test (not as accurate) or an arterial blood gas (instead of venous blood). A buildup of CO2 will feel like hyperventilation, and also feel like you can't get air. You can get dizzy, be unable to walk, etc. Or you could loosen your bra. Oy. That's why I said you need more testing. You can't tell by those breathing tests you had or by "looking" at someone; like Alice said. My pulmy is thorough. You need one like that. Do not let them test your arterial blood gas while on oxygen. It's sort of like having your glucose tested after eating a hot fudge sundae. Skews the results. They did that to me during my crisis. Idiots. It can make you look like you're having hyperventilation (NOT anxiety, the technical breathing version of hyperventilation) when you really have CO2 buildup.

It's Halloween this next week and I doubt I'll be able to do the regular carving. Oh well. Life hasn't exactly been nice but I have to make the best of it, like everyone else. I wouldn't like the alternative. My farming Norwegian ancestors spawned a tough broad even if I do feel like lutefisk lately.


Annie

Annie, this is a WONDERFUL thread. We are all so different -- in our symptoms, our abilities to tolerate treatments, and in our willingness to accept the side-effects from those treatments.

I was a teacher, too -- now on disability. I am only on Mestinon. I cannot take Prednisone due to steroid psychosis -- it makes me suicidal. I wanted a thymectomy -- my neuro tried to get me "strong" by using Plasmapheresis (I "died" -- bp dropped to 44/16) then IVIG (I developed aseptic meningitis). So, no surgery. I am allergic to almost everything -- have reactions to LOTS of meds -- antibiotics are a NIGHTMARE! Lymphoma and skin cancer run in my family, so no Cellcept. I have a double first cousin who had liver failure of unknown origin and had to have a liver transplant, so we are ALL afraid for me to try Imuran. It just goes on and on. At my last appointment, I was not so great, my neuro suggested that we just and see -- I was in total agreement. Neither of us wants to "kill" me again -- LOL!!

So far, I have managed to keep myself OUT of the hospital. I get a LOT of sleep -- drink water or weak tea CONSTANTLY -- try to remain as calm and stress-free as possible (hahahaha) -- stay AWAY from chemicals and PESTICIDES (my dogs now get garlic powder in their food instead of flea and heartworm treatments). I still go into exacerbations when I get sick OR stressed OR if I inadvertently run into a chemical or pesticide (like when the crop dusters fly over), but, otherwise, I am "ok". "Ok" means that I am NOT on a respirator, I am NOT in a wheelchair, and I am NOT in a hospital. (When I am in an exacerbation, I spend 3 months going from my bed to my recliner -- sleeping or napping most of the day.)

Actually, in the SUMMER months, I am "almost" normal. The sunshine does WONDERS for me (Vitamin D, anyone?) I have mostly Bulbar MG -- I NEVER can talk -- but, in the summer, I am even able to do "some" yard work!

Buildings are BAD for me -- my own house is ok -- but, I CONTROL the environment and air quality. At home, my ambulation is pretty good most of the time. About five minutes after I step into a store such as Wal-mart, I start dragging a leg -- and my DV starts in BIG TIME.

I have come to "accept" my life as it is -- and to see the blessings. A lot of MGers that I know ARE taking the BIG drugs and NOT doing any better than I am. Does this mean that they shouldn't take the drugs? That is NOT for me to decide. Does this mean that I SHOULD take the drugs? That is ONLY for me and my doctor to decide.

This is why I LOVE this discussion!! You have given us ALL a chance to say what we are doing AND why -- without pointing fingers or feeling obligations or feeling guilty. We EACH have the right to make our own choices -- to choose our own paths -- to live our own lives. We are all so different -- yet, this "disorder" makes us "kin".

Wow. Thanks, Jana.

So you're pretty much in the boat I am in. Steroids cause too much fluid retention, make me nutty and cause me to have instant infections. Since I'm allergic to lots of antibiotics, immunosuppression is out. Can't do the "fluid" alternatives either (IVIG and plasma) for fluid imbalance reasons, capillary permeability and an arachnoid cyst. Phew. That felt good to get out.

That's so weird that summer is good for you. Are you sure you don't have one of the CMS weirdo genetic disorders like a sodium channel problem that causes not enough acetylcholine? I melt in the heat.

I know, I have friends who can't let go of work. Can't blame them. If I could work, I would. But I'm not willing to do all the drugs in order to attempt it. Choosing drugs is a good choice for some people though.

These are very tough decisions to make. I wish none of us had to make them. It should all be good.

I'm glad you didn't stay dead after plasma. I'm sorry you went through that. I haven't had plasma but have had severe dehydration and almost hypovolemic shock. It's damn scary.

And it sounds like you have to pamper your immune system like I do. Which is a good thing for everyone to do but it's not always that easy. I sleep as much as my body tells me to. Then sometimes I ignore it and drink coffee anyway.

It's such a crap shoot. You don't know how you'll react to the treatments. And some people can't even take Mestinon. And then so many of us have other medical problems or diseases. Not very fair!!!

Anyway, thanks for being so open, Jana. I appreciate it.

Annie

I'm not okay right now but I like your definition of "MG okay." I'm not in a wheelchair or on a respirator or in the hospital either.