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

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.

Annie, I love what you say about letting the harmful things roll off your back like rain. I was just telling my husband that I strictly ration my emotional energy. If you're on a boat with limited fresh water, you're not going to use it for, say, a water fight. You'll save it for washing and drinking. If you're really short, you'll skip the washing. If you're really, really short, you'll drink less than you need to.

I have seven kids. They need my emotional energy. That means I don't squander any of it on stuff that makes me use up all my gas revving my wheels while I'm stuck in the mud and not going anywhere (wow, this must be Mixed Metaphor Day!). For me, that means politics. Sorry, folks, I'm excused! I have an illness that means I can't participate in politics. For other people, politics might be an energizer, but not me.

Now, as for "reasonable expectations": here's the thing. There are a lot of long-term treatments for MG that have bad side-effects. I'm taking Imuran. If I didn't believe there was a somewhat substantial chance that it will eventually help me, it would be foolish to take it. I need some information in order to balance the risks against the possible outcome. Right now, my judgment--to the best of my knowledge--is that the risk is worth taking. For me. In my particular situation.

So there are practical reasons like that for trying to figure out what sort of success rates such treatments have. But there are emotional reasons, too. Like we've been talking about, we have to avoid both false optimism and false despair. Hope is healthy, but not false hope. I understand that MG is not a predictable disease. But there is still a difference between cultivating a healthy hope that is based on knowledge, and sticking a smiley face sticker over my face and pretending that everything's fine, and that anyone who's suffering just needs to cheer up. Like Jana said, it's a tight-rope we're walking.

Abby

Thank you Annie! I just want to add one more irritant to the list. My nueros ( the two I've had) always want to know what "percent" better I am. Better than when exactly? Yesterday, last year, before I got sick... Let's just say these are the things I have been able to do recently and the consequences for doing them.
Now if we can find a way to make the literature explain more correctly our disease...
I also wanted to talk about telling the new MG ers the full truth about it... It took my nuero over a year to tell me that he was hoping I would get back to normal, but by this point, he thinks this is as good as it's gonna get. Now why couldn't he answer that question the 20 times I asked him what can I expect for the future?
Jessica

Thank you, Annie! (And everyone else here, too!)

I'm of the opinion that a suppressed immune system is what causes cancer (and obesity, diabetes, arthritis, etc.) - but I'm not a doctor/researcher, so it's just an opinion. Unfortunately for people with MG, it is a "damned if you do, damned if you don't" scenario, since we have to take immunosuppressants to slow the progression of this disease.....

We do need to remember that doctors are human, just like the rest of us. And only 600 new cases of MG are diagnosed in the US each year. A doctor will only see us for about 1/2 hour every few months, so they have no way of knowing what is going on day to day, and they are usually "comparing" us to other patients in their practice who have MG.

I told my neuro that I was noticing "balance" problems, so she told me to walk down the hall. Then she told me that "balance" wasn't really an MG symptom/problem: "Those muscles aren't affected by MG."

So I had to clarify for her - what I meant was that I had noticed that it took me longer to "recover" whenever I would stand up, turn quickly, etc.; my muscles weren't responding as quickly as they used to. It wasn't that I was falling over/down, it was just that my body was taking longer to respond to my brain's signals to right myself because my muscles weren't working like they used to.

And she was recommending exercises to "strengthen" my muscles. WTF????? My muscles are VERY strong, but I have to conserve my energy - and you're telling me to EXERCISE?!?!?!?!?!?

But our doctors (and everyone else, really) don't truly understand how utterly TIRED our muscles are, and how just a little bit of exertion can sometimes wipe us out for the rest of the day (and how exercise makes us WORSE, not better). Or how we never know from day to day how much energy we are going to have. Or how frustrating it is to not be able to plan in advance any more, because we don't want to disappoint anyone.

That's why this forum is so very valuable - it lets us know that we aren't alone in what we are experiencing. I appreciate each and every one of you - you have helped me (and my family!) so much since my diagnosis!