This is going to be LONG but probably not long enough. I don't have the hand/arm strength to type everything. You guys will have to pick up the slack. I'm doing a new post, so as not to muck up Abby's. Pour some coffee for this one.

Last year, Cary Zwolski - whom I worked with at the Lupus Foundation - died from complications of the treatment of lupus. The years of immunosuppression caused her to have cancer which they could not put into remission. She was an amazing woman and went through so much while trying to fight her lupus. She was one of the unlucky ones who couldn't do without extreme treatments. While her attitude helped greatly, lupus was her constant companion and relentless in the destruction of her body - though not her spirit. So often these AI's (autoimmune diseases) are "Damned if you do, damned if you don't."

I'm telling you this because it isn't always the disease that takes you out. While there are treatments for MG, they come with a host of side effects that can also alter your health, well-being and quality of life. We can debate here about the prognosis and severity of MG and whether it is "progressive" or not but that does not change the fact that it significantly impacts the lives of all of us, not to mention how it affects our friends, family members and - if you are lucky enough to work - co-workers.

When looking at "prognosis," doctors only look statistically at it. This percentage of patients had a drug-induced remission of symptoms or that percentage had improvement but then relapse. It says nothing of the daily life of an MGer and what impact MG has on us. And unless a doctor actually HAS MG, there is no way they can ever know what it is to live with it. Having MG isn't only a health issue but, as Susan (DF) so brutally put it, a destroyer of our finances, mental health, cleanliness, social life and so many other aspects of living. I personally can no longer clean very much, have other health issues and am lucky to not be out on the streets, thanks to my family. While my attitude is great, I am frankly not doing well in general and have been quite despondent of late. Here is what I say in the chapter on suicide in my book:

So while a positive attitude helps, that doesn't mean that we don't get beaten up and down by MG and have days when we want to scream, cry or give the H@!! up.

Whoever said that "MG is the most well understood autoimmune disease" should be legally required to retract that statement. Personally, I think celiac disease is the best understood AI because they not only know what happens but how to make it "go away." And even though not eating gluten is enough, the drug companies are still working on a drug to make it so CD patients can eat gluten. Seriously, they are. Though there are still things being learned about CD as well, like that it attacks the brain. And that gastroenterologists think it's okay to do away with an antibody test (reticulin) because it costs too much, only catches the disease early on before a positive antibody and that they want a "magic bullet" test.

They are still discovering new MG antibodies and do not truly understand all there is about each "subset" of MG. If they did understand it so well, they'd have a damn cure for us! Or at the least better treatments. And, yeah, I agree that saying it's so well understood sets us up for a reduced amount of research, as if we don't need to know any more.

And would the companies fighting over the rights to use Monarsen in the United States please get over themselves and their greed and make the damn deal?!!! Can you imagine only having to take a drug once a day instead of 8 times?!

Now on to the discussion of whether or not MG is progressive.

I've had MG my entire life (53 years). I was diagnosed at age 42, though diagnosed with ocular MG at 41). I got noticeably worse when I had a B12 deficiency in 1997 - 1999. I have been going downhill ever since. Like Jana, I'm stuck with Mestinon only. I have to manage with common sense, patience and coffee. My personal experience says that MG is "progressive," especially if the autoimmune process that causes the destruction is not stopped. The difference these days compared to when I was young is that I don't "bounce back" as easily as I did then. I was always compensating when I was young for not being as physically able as others were but I still lived a fairly "normal" life. I've had to scale everything in my life way back now, to the point of nearly losing the ability to do what I WANT to do.

Some studies say that you don't have "obvious" symptoms until you have about 30% destruction of your NMJ. Obvious to doctors or to patients? I think patients instinctively know they have something wrong even before that but "obvious" or positive test results may not show up right away. Right Mike, Abby, Tracy . . . and everyone else?!

MG is all about weakness but we are weak because our muscles don't get enough acetylcholine. Even the "Why?" of that isn't straightforward. There can be destruction of the NMJ. There can be "blocking" of acetylcholine. It's so complex that I'll leave it to the articles below to explain it. But the bottom line on the "Is MG progressive?" question is that if you do not stop the antibody destruction, it is indeed progressive. Do you think the antibodies only destroy certain areas of the NMJ and only on Wednesdays? Well, it might be that they do. There is simply not ONE answer to this complex question of progression.

The fact is, however, that the science of what happens in MG equates to it being a progressive disease. For example, for those with pernicious anemia or achlorhydria - back before the early 1900's - there was no treatment other than eating liver. I guess that's better than dying. People simply just died. A slow, painful death, BTW. If someone doesn't know they have celiac disease, their small intestines will be destroyed and they will slowly - or not slowly - die of nutritional deficiencies and the related disease states. Autoimmune diseases are destructive and if they are not "stopped" or slowed down, they do more and more damage.

With MG, the damage done can be slow or fast, persistent or intermittent, mild or severe or somewhere in between. You may be able to work or you may not. There are so many variables, which is why they say it's the most unpredictable disease out there. It's the "manifestation" of MG in each of us that is unique and impossible to predict. Not to mention that many of us have other diseases or health issues complicating our overall well-being.

Which leads me to my quite amazing discussion with Abby, via "private" messaging. Thank you, Abby. Since she was open to it being made public, I don't have a problem with that either. I regard her highly and my intention was one of caring and pursuit of the truth. Nothing she said made me "angry" and, well, no one can "make" you anything! I simply think we should all strive to be accurate. There's certainly no need to tiptoe around or watch what you say! We're all unique and that's fantastic! it'd be pretty dull if we all acted, thought and spoke the same way.

I'm of the school of thought that someone with MG needs to be aware of ALL of the potential ramifications of it. Why? It has been shown that people newly diagnosed with MG often go into an MG crisis in the first 1 - 3 years because they don't know it can become severe or they don't understand all of the complexities of the disease. Like stay the heck out of the hot weather or see your doctor the second you feel you have an infection. And STOP having "pushing it" as a daily attitude!!! Or don't listen to your doctor when he says to swim every day. I can't believe your doctor said that, Tracy. I LOVE to swim but found myself "progressively" unable to do it through the years. We had a pool in our backyard growing up and I still have dreams about it (it's gone now).

We have 640 muscles. There's no way of knowing which set of muscles will be affected, when they will be affected, how badly or for how long. And even if we are careful, we can get worse. The reason I think that knowing as much, accurate information that MGers can is essential is not to make them freak out or get scared or fly into a chocolate binge. Not giving them the WHOLE truth can give them false hope. Giving them the brutal possibilities gives them REAL hope. It means that they - and their doctors - have the ability to have the most power over this difficult disease. It means that when an ER doctor blindly offers up Ketek for an infection, an informed MGer will say NO! An uninformed MGer might take it and end up in a crisis.

And, yes, I'm working on the drug list. My health is not great right now, however.

I think the bottom line here is that we all have the same goal. To help each other, support each other and to both educate and learn. AND try to have fun while doing it! It doesn't matter if we are doing well or badly or somewhere in between. I, for one, need to feel useful. And contributing here is one way in which I can do that. I no longer have the ability to socialize more than with my immediate family or via emails or the occasional phone call with friends. If I talk too much, I'll spend the next couple of nights with my jaw/tongue cramping, sleeping with my mouth open because I can't close it and not breathing well. I feel absolutely worthless, and I'm being dead serious. What do I have to feel good about? Not getting sicker? I'm afraid my kinetic, Norwegian genes aren't satisfied with doing nothing.

I am happy for those MGers who are doing well. I think, however, if they actually polled all of us, they'd find a completely different story than the "PR" one they put out there. I sometimes think doctors need to feel as though they are helping us even when the opposite is often true. They can feel as helpless as we do. Yes, I just defended doctors!

I know that we may want to make it "ok" for someone by putting hopeful info out there but I know that when I was first diagnosed, I wanted to know every little thing about this disease so that I wouldn't get worse. Of course, I became reckless when doctors were reckless with my care and ended up in an MG crisis anyway. So let's put the whole truth out there and keep doing it like you all are - with LOTS of love and support. I appreciate each and every one of you!



Annie


MG canine care appears to be better than human care.

http://www.vetmed.ucdavis.edu/vsr/Ne...%20Gravis.html


This article may give the best explanation of what happens in MG.

http://emedicine.medscape.com/articl...overview#a0104


WUSTL is my favorite website for MG.

http://neuromuscular.wustl.edu/synmg.html

http://neuromuscular.wustl.edu/mtime...htm#complement

http://neuromuscular.wustl.edu/pathol/mgpath.htm


Scan down to the MG section. It contains very good info about how damage is done.

http://www.dartmouth.edu/~dons/part_3/chapter_21.html


They're still unsure of MuSK level of damage or how that's done!

"MuSK antibodies do not appear to cause substantial AChR loss, complement deposition, or morphological damage. Effects on MuSK function need to be explored."

http://www.ncbi.nlm.nih.gov/pubmed/15668981


This is a great slide show of MG pathophysiology

http://www.slideshare.net/smcmedicin...cl-features-dd


Medical Disability Guidelines

http://www.mdguidelines.com/myasthenia-gravis


Diagnostic Criteria

http://www.medicalcriteria.com/site/...mid=80&lang=en


We have "odd" fatiguing symptoms? Duh.

http://www.ncbi.nlm.nih.gov/pubmed/7499922


Misc. on disease severity and prognosis.


http://onlinelibrary.wiley.com/doi/1...017.x/abstract

http://www.ncbi.nlm.nih.gov/pubmed/15885043

http://www.springerlink.com/content/6umd3adn164hm9fu/

http://jama.ama-assn.org/content/198/7/699.abstract

Note: Gratifying results? For whom?

http://www.sciencedirect.com/science...22510X9190260E


As far as remission goes, there is drug-free remission (rare) and drug and/or thymectomy induced remission (more common).

And this article, obviously not a scientific journal source, is purely for humor's sake. Can you spot the typos? The obvious grammatical errors? The funniest sentence was the fact that our "prognosis" can be cured. Now if they would only work on the disease.

http://www.musculardystrophysymptoms...prognosis.html


And the PDF below is one of the many articles that says MG is the most well understood disease. STOP saying that!!!

Attached Files

PathophysiologyofMG.pdf (152.2 KB, 602 views)

Thank you!!!!!!

Thank you so much. I'm sending this to my sister right now.
Big Hugs
Mike

Well written Annie

Thank you, Annie. You've been an inspiration to me since I first came to this board. That sounds like a mere pleasantry, but I mean it quite literally: you give me something to shoot for. You show me how my suffering can be used to help other people. I want to be like Annie when I grow up.

We are all still somewhat in the dark. We know that "MG is never progressive" is a false statement. But from what I can tell, to say "MG is always progressive, no matter how it is treated" would also be false. The truth is somewhere between.

Most of the people on this board are very sick (much sicker than I am). I know that the symptoms of MG vary so wildly from patient to patient that it doesn't make sense to talk about "average symptoms." But what about the average severity of the disease in general? Is the average severity of MG here representative of the average severity of MG in general?

The picture of reasonable expectations that I get from my doctor and the picture I get from reading stories here are radically different. You and Alice and others have convinced me that my doctor's picture is unrealistically rosy. But I'm still wondering if the severity of the disease experienced by members here is typical. If not, newbies need to know that, too. Your points about false hopes are indisputable. I'd like to also talk about reasonable expectations.

Abby

Annie,
Thanks for this wonderful information. I have learned so much from your many thoughtful posts to this board.
Cate

Thanks, guys. I learn a lot from you too.

Abby, I had to laugh when you said "reasonable expectations." I don't think there's anything reasonable about MG. It's utterly unreasonable. It won't leave me alone - ever. It makes me think I'm fine, I run errands and then lands me on my derriere two days later.

I think the key word with MG is "adapt." We are constantly adapting to what it does to us. You can't "control" MG, so I think people with control issues might find it harder to live with MG.

MG's autoimmune process is progressive. That can be slow, fast or in between. And how it progresses depends upon the age you get it, if you have a thymoma, if you are seropositive, what your overall immune picture and physical health are, if you have other disease states, etc. Corrosion of certain metals is progressive but how that happens and when depends upon so many factors too. It's pretty much the same thing. No easy algorithms here.

The "manifestations" of MG is what's variable. Just like the manifestations of corrosive metal can be an aging bridge, an unstable bridge or a bridge collapse, like what happened in MN in 2007. If you carve up a bunch of veggies for soup, your arms may be more weak right away, the next day or the day after. That doesn't necessarily mean that the antibody attack is greater in your arms. Unless doctors carve up an entire body, there's no way they can know how evenly distributed an MG antibody attack is in the body!

I think you might be looking for an easy answer when there simply aren't any with MG (please correct me if I'm wrong). And that's the truth! Some people like Erin are really bad and there's no rhyme or reason to it. I hate that some people with MG or lupus or other AI's are worse than others. Some people do fine like Sue or another friend of mine. But no one can figure out exactly WHY those differences exist yet. The immune system is extraordinarily complex and there could be "kinks" in it that one person has but another doesn't.

All we can do is know as much as possible and take our best shot at this stupid disease. Even if someone is "fine," all it takes is pneumonia and they go downhill.

Dr. Oz talked about women's brains being more "reactive" last week, on his show with Goldie Hawn. She was amazing, BTW. They were discussing the brain. And how to be happy. I believe that women are genetically disposed to being that way because we're the caretakers. But we don't have to let ourselves be so reactive and can be calm with meditation and so many other things like nutrition dense foods. Why do so many women get AI's more often? Is it our reactive brains, our hormones or something else?

The key to staying well involves so many things, like getting enough sleep or laughing or staying away from electromagnetic fields (they damage DNA/RNA) or so many other things WE are in control of and can do something about. This is the area where doctors can't help us. We have to do this ourselves.

I'm going to get all "spiritual" now, so tune out if you want. If you can manage to see anything harmful in your life, like the news, mean people (who probably need compassion too) or anything else as something you can let roll off your back like rain, then you might heal yourself a little. If you can let go of pain and forgive those who cause it, you might heal yourself a little more. If you stay in an energy of love as much as possible every day, your immune system "might" get better.

No, I'm not saying that a positive attitude cures anything! But what we think, say, feel and do does indeed affect our health and well-being.

One of the most amazing books I have is "The Source Field Investigations" by David Wilcock. Go ahead, make fun of his name . . . then get over it! It talks about so much more than the brain and love and it is a dramatic look at our universe. I adore this man and his pursuit of truths. He's one of the many "science guys" I've watched through the years.

This is his quote from the book that I always go back to when I feel overwhelmed:

"By moving through the self-hatred and fear to reach that hard-earned place of acceptance and forgiveness - of both self and others - we heal the world."

He then ends by saying: "I love you. I am sorry. Please forgive me. Thank you."

Short, simple and yet powerful.

Can you imagine how much better we'd all be if we could hold onto that kind of love energy all of the time? No, it won't get rid of MG but it might helps us make it through life WITH MG.

Annie

If you need a "cute" break, here. It's summer in the antarctic and they have babies right now.

http://www.martingrund.de/pinguine/pinguincam1.htm

BRILLIANT post, Annie! Words escape me....................all I can say is that you just hit the nail SQUARE on the HEAD!!!

Thank you again Annie!!
Cate

Thank you for writing this Annie.

Sorry for the putting it so "brutally". I didn't mean to...I've been having a difficult time dealing with my life as it falls apart. It is hard starting over at 40...but I don't think I need to explain to anyone here.

This forum has helped me more than anyone else. I think if all I had to go on is my neuro who tells me to take Mestinon and I'll be able to live a normal life...I wonder if I might be suicidal by now, but I'm not. I'm still fighting for a way to live through this mess. I've learned so much about how to live and I have to thank you guys for that.

I do wonder at times if the medical world understands how the immune system really works. If only we could figure out what happens when people do go into remission, or when our symptoms are minimal. I wonder. I wonder if there is a part of our immune system that stops our body from attacking itself, and if there is a way to strengthen that part of the immune system.

I do think it is good to be spiritual. I have been meditating a lot and am listening to the inner voices and my body. I have some strange yet amazing (to me) poetry and art I've created based on my meditation, like nothing I've seen before. I've really been feeling better as far as my MG symptoms go (ignoring my finances and the cleanliness of my house - I have spiders living and weaving webs on my ceiling and I've decided they can stay, lol).

I've also decided to pick up my previous work in herbalism...don't laugh, I've found some wonderful help from my plant friends. Maybe I can make a living this way somehow, I don't see how yet but am hoping, plus maybe it will be a way to help others. I would be much worse without my herbal teas, I've experimented. I'll make a post on some of my findings about plants. I'd love to be able to help others somehow, and be useful in my life.

Along with spirituality, I think making major life changes might help us, or at least me. It could be that the things we do, eat, or even think a lot could be part of the reason we have developed MG. Maybe we need to think differently, like Annie said...love and forgive people, let the negative things roll on by us...maybe it will help. I know I feel better on days when I am happy, when I live in the moment and don't think about tomorrow or any troubles or problems around me.

Thank you Annie and everyone here for your support and help.

(Annie, thanks for mentioning my name...I've been feeling so lost recently it felt like someone threw me a lifesaver, lol.)

I want to say that I have love for all of you, even if I'm not too good at saying so.