[AnnieB3]

You wrote this in Abby's thread.

Hi Annie,

A basic question:
I used to have this all the time. Does that mean that those with negative blood tests have different antibodies that don´t respond to the standard blood tests? Or is their ´transferrable´weakness caused by some other type of process?

Abby is trying to work some things out, so I thought I'd start a new thread for your question.

Antibodies can circulate in the blood or they can be "tissue bound." It's possible that, in some cases, not enough antibodies circulate in the blood to show up on a blood test. And sometimes antibodies don't show up until later on in the disease process. Or an MGer is so mild that their "attack" isn't as bad as others (yet).

Researchers are looking at multiple antibody possibilities in MG, as well as a channelopathy (as in Abby's post) as a cause of MG. There's LRP4, a new MG antibody which Brian brought up awhile ago. Titin. Ryanodine. The list of possible antibodies is long because there are a lot of places in the neuromuscular junction that antibodies - begun by proteins - could attack.

Part of the issue about one part of the body becoming weak when it's not being used is that you can't separate parts of our bodies! Think about what muscles you use when you sit. Well, if you didn't use any, you'd fall over like a rag doll! Which is what happens in an MG crisis. We use a LOT of our muscles while sitting. Our "core" muscles especially, which can make us short of breath if we overuse them.

If anyone else can answer this better, please chime in! I'm not too awake yet today.

I didn't realize all of the muscles I used while laughing. Years ago, I spent a really fun time with family members who were in town for a visit. My neck cramped up after minutes of socializing. I was short of breath and overall weak for two weeks. I slept with my mouth open for a few days due to jaw/tongue weakness. Yes, muscles not only open things up but close them too!

Does this help answer your question? Do you have more? Don't be shy about asking what you need to know. MG is such an odd little disease. You can feel like you have a handle on it and then it'll just surprise the heck out of you.

Annie

[AnnaMarie]

With the jaw/tongue weakness, sometimes it's hard for me to figure out which one is weak or if it's both at the same time. Especially if it happens while I'm eating.

[Anacrusis]

Originally Posted by AnnieB3

Yes, even if you are not actively using one muscle group, the others can get weak because the antibody attack isn't too particular which area it attacks.

Thanks Annie, your answer is just perfect……

I do have another question….

Is this´wandering´muscle weakness phenomenon exclusive to antibody activity in MG or does it also exist in other diseases/conditions as well?

And yes indeed I have to get used to how to post on a forum. When I first got here I wasn´t planning to join a forum at all - just googling SFEMG´s again - and somehow I managed to crashland into somebody else´s thread without my parachute opening - I´m not like that in real life!

[AnnieB3]

You know, everyone here just takes care of each other. So you stumbled onto a great forum with lots of info and caring! No matter what people are going through, they all lend a hand. When you have MG, support is invaluable, especially by those who "get it."

A thought came to me last year. How could scientists or doctors know what the MG antibody attack is doing in all of the 640 skeletal muscles unless they biopsied every single last inch of them? Can they really say that antibodies are attacking us everywhere all of the time? I don't have an answer to how that all happens either.

But I do know that some antibodies circulate and some are tissue bound. And do antibodies have a "life/death" cycle? If they do, what can we do to facilitate that death? Is it indeed by keeping our immune systems nutrient rich and "happy?"

Lupus, for example, is such a horrible disease. No one can predict what body system will be attacked or when by inflammation. MG is the same. I'll bet just about every autoimmune disease is like that, like MS, arthritis, etc.

I have a couple areas of my body that have been damaged by injury. When I get a fever, which hasn't been for years, they ache more than other areas of my body. So you have to wonder if any AI's or cancer or inflammation or infection tend to attack more "vulnerable" areas. Like how heat makes muscles in those with MG more vulnerable.

I hope you'll feel at home here. It helps so much to have others with MG to turn to.



AnnaMarie, I don't think it matters. It might be more important to get doctors to figure out why it's happening first and get the appropriate treatment.

Annie

[alice md]

A thought came to me last year. How could scientists or doctors know what the MG antibody attack is doing in all of the 640 skeletal muscles unless they biopsied every single last inch of them? Can they really say that antibodies are attacking us everywhere all of the time? I don't have an answer to how that all happens either.

You are right Annie,

there are so many assumptions we make in medicine.
It's OK, because we have to, as there is no way we can truly understand the complexity of those biological processes called disease.
At the same time, we need to be aware of the fact that we only have a fairly simplistic view of an extremely complex process.

In fact we are very far from fully understanding both the immune system and the complex control of muscle function. What we know is really the edge of the iceberg.

We can make pretty good educated guesses most of the time, but it is not surprising that they often fail.

It seems as if there are physicians who know everything and never make mistakes, and those that know much less and err.
The truth is that there are physicians who don't know everything and make mistakes, but don't admit this (and always find someone they can blame) and those who don't know everything and make mistakes and do admit them (and try to correct them).
There are those who read the medical literature and notice the gaps (and even try to do their own research to try and fill them) and those who use this net full of holes as an umbrella over the head of their patients (and blame them for getting wet).

[Anacrusis]

Thank you! Why can´t I have a conversation like this with my own doctor?!!!