Modulating Antibodies Help
 

As you know I have generalized MG but my sister has been having trouble with her muscles in her legs. Well she knew I had MG and our mom had MG, so to shorten the story her doctor ordered up bloodwork. Today her results returned as "Elevated Modulating Antibodies". Does anyone have an idea if this means anything related to MG? As best I know she doesn't have any Ocular problems. Will get more details tomorrow.
Thanks
Mike

Mike, Wow, that must be unsettling. MG can run in families, though it's more rare. Often it's CMS that tends to run in families due to the fact that it is from a genetic mutation.

Do you know what the exact number was and the range that was given? Was it done at Mayo? Was she on any drugs before/during the test?

The chance of a false positive is small, especially when done at a lab like Mayo. 3 - 4 % of those with MG, at least that they know of so far, only have modulating antibodies. I'm one of those 3 - 4%. Although I can't say for certain since I've been on a steroid for my asthma ever since they started testing.

Perhaps your sister can take photos of her face first thing in the morning and then later in the day. Try to make it the same lighting, distance from camera and head angle (looking straight ahead). She could even do an upward gaze after the first photo to see if her eyelids droop afterwards.

Ptosis can be subtle. It's not always the eyelid almost all the way down the way it's depicted in books! To check for double vision, she or someone else could hold their pointer finger in front of her eyes and slowly move it back and forth in front of her vision. Or start with it about two feet away and move it towards her face. A person will not always have double vision in all areas of their visual field. Sometimes I only have it on the sides. It depends upon which muscles are weak at the time.

That statistic of 3 - 4% is directly from the "MG experts" like Dr. Harper of the Mayo Clinic and Dr. Howard of UNC.

The modulating antibody is not thought to reflect anything but MG. There have been speculations but no study that shows it is related to anything but MG, at least that I can find. I have searched everywhere! And if her clinical exam is positive for muscle weakness that gets worse upon exertion, that's pretty telling. Have they done any EMG's?

I hope she will get answers soon. Hang in there.

Annie

http://www.mayomedicallaboratories.c...nit_code=83370

http://books.google.com/books?id=Ys4...tibody&f=false


One more thing. You should both be fully evaluated for the possibility of a thymoma, if that hasn't been done already.

Annie I can not thank you enough for your response! I think I said before that my mom and 2 of her sisters had MG. When I first started reading about my MG everything said it was not inherited, at the time I thought bull****
I will post more about my sister after I hear from her. She has a meeting with her doctor and I want to wait and see what the Dr says. Her Dr has already said that if she suspects MG she is sending my sister to Duke Univ we have a Dr's name there that has been referred to us by a family friend (neuro-surgeon) his name is Dr Sanders who is supposed to be on the cutting edge of this disease. I will get more details from my sister as things calm down. Again thanks for your input it really helps us newbies.
Mike
Oh I have had my Thymus evaluated and it was cleared. My sister is JUST starting so she has a long way to go. My first bloodwork to Mayo was 12 vials of blood OUCH
PS just got emails from my sister and it doesn't sound good
1. You know, I first went to the doctor because I was sitting at work and my arm and face felt "funny". When I first went to Dr. Lopez and mentioned the MG with mom and you, she said "Oh no. They must be misdiagnosed. This usually doesn't run in families." She didn't even consider testing me then. But on my third visit I told her about your test results. She looked stunned and had me go to the lab that morning. Maybe my results could be caused by something else??

2. (symptoms) The side of my face feels funny, like heavy. Also, my left eye some days is real droopy. But it doesn't last. Like when I look in the mirror to put on my make up my eye lid is laying over my eye lashes. Also, my arm is weak and some times feels tired. Sometimes I can't pick up the gallon of milk off of the top shelf in the fridge. I have started using my right arm. I think that my leg numbness is caused by my back problems.

Geez, Mike, I must've forgotten about your Mom and her siblings. I guess the good news is that your family is about to make history, and get lots of attention. The bad news is that MG sucks. ;) It's manageable though.

This site is a bit complicated but well worth the read. Down towards the end are several odd duck acetylcholine diseases, including familial MG ones. I printed it off at one point, just in case they ever shut the site down. It's such a wealth of info that you can't find elsewhere.

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

Sure sounds to me like your sister has MG. Bad doctor for pooh-poohing her and thinking she knows everything. No one knows everything.

I know I'm a broken record but you guys should have your B12 checked on a regular basis. There's something called autoimmune polyglandular or polyendocrine syndrome where people tend to have more than one autoimmune disease. Not that I think you would but since MG runs in your family, it's best to be on the lookout for others like pernicious anemia, thyroid issues, etc.

Your sister's docs should evaluate the leg "numbness," which is partly why I mentioned the B12. And sometimes weakness can be "felt" as numbness. When a muscle isn't getting a signal to work, it will be numb, like when you cut off the circulation to an arm you are sleeping on. A good doc can figure out what is sensory symptoms like numbness and what is weakness.

I'm sure you guys will get good care! That really helps. I'm sorry you both have this disease but you'll be okay.

:hug:
Annie

Annie you are a sweetheart for helping us. You know it upsets me more that my baby sister has it than me. I guess we have kids and cousins that need testing also. Geez I was thinking my sisters Doc should get her on some meds pretty quick to try to prevent the double vision like I have. She still works but I"m retired.
Mike

Well, I'm glad I can help. When I needed help back in 2000, a site like this helped me. I'll never forget what that felt like, to have a place to go to where people "got" it.

Double vision isn't fun but the worst part about MG is having generalized weakness that gets worse or swallowing or breathing that does. Avoiding an MG crisis is a big goal for anyone with MG.

I won't bore you with details but I had MG my entire life but simply passed my physical inadequacies off as my "normal." It wasn't until my B12 deficiency in 1997 - 99 that my MG symptoms got markedly worse. I didn't figure out until March 2000 that I had ptosis. Now that's denial. ;) Going almost 40 years not knowing you have a disease. I was misdiagnosed at age 10 with lazy eye, when it was really MG.

Don't worry, your sister will get VERY good help from Dr. Sanders. And, yes, they will WANT to do testing on your other family members. ;) But will they want to do the testing!

Annie

ANNIE can I ask you a favor? I would like to scan my blood work to you via private message and see if you can give me the breakdown. My neuro-muscular doctor was reluctant to do that and my GP wouldn't touch it with a 10-foot pole. None of my doctors know my sister has it. I'm curious to what they will say now.
Thanks Again
Mike

Okay, that's odd. You had s-loads of blood work done and those two doctors won't discuss the results with you? Is it because the "Goliath" Mayo ran the tests? Who ordered the tests?

When doctors won't discuss something, you have to wonder why. Why wouldn't they help you figure it all out? Isn't that their JOB?!

I'm not sure what help I can be, since I'm not a doctor, but I can at least identify what the tests mean. As Alice would probably tell you, test results need to be taken together with the clinical picture to determine what they mean. Maybe some pointed questions to your doctors would help them to answer you. How frustrating.

Mike,

I wanted to throw another thought out there concerning your family getting MG. It is a possibility that your family has been exposed to hazardous waste. There are neighborhoods built on or near old chemical dumping locations. Some of these chemicals are known to cause autoimmune disorders (or at least increase your chances of getting one). You can look up known locations for polluted sites using the following website.

http://www.epa.gov/emefdata/em4ef.home

This may be a crazy idea, but I wanted to share this with you just in case it is helpful.

Thanks Desertflower but we have all been separated since 1960. But that is food for thought.
Thanks
Mike