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)