What was your IGA level? I'm asking because often we can have labs that are a little off yet it is insignificant. These levels can be off a little without signifying anything.

The reactions you had to IVIG sound pretty normal. I've had anaphylaxis to IVIG many many times, and it was hard to breathe, my chest tightened up, I was panting, massive redness all over face and neck, heart palpitations, blood pressure shot up, hoarse voice, hot, burning face and neck, etc. I have to get mine at a Cancer Center because of my anaphylactic reactions. I am not IGA deficient, it is fairly common to get reactions like you described. Being IGA deficient and getting the wrong brand of IVIG can kill you, not cause a minor reaction.

Also I know a lot about Primary Immune Deficiency Disease. My 17 year old son has had it his whole life. He was just cleared of it when his IGG just spiked up to 1040 after being in the low 600's the last several years.

He was super sick his whole life, missed a ton of school, constantly had infections, and had 22 ear infections by age 2 to give you an example. To be diagnosed with PIDD or CVID your IGG has to be really low, like 300 or 400. You have to have infections that do not clear up, and can become life threatening or require hospitalization. It's basically like being a mini version of a Bubble Boy. Cody could never fight anything off, he caught everything going around, his sinuses were completely impacted on MRI, he could not breathe through his nose for years. Even with all that, he was only borderline, and he was practically homebound. (he had a lot more symptoms.) The diagnosis of PIDD is only given to people who are basically severely ill and have a very low IGG/IGA, not borderline or even somewhat low, and are constantly sick and in the hospital unable to fight off infections.

We've been dealing with immunologists for years with Cody. Trust me, having asthma/eczema/gluten allergy is NOT PIDD. If you have it, you know it because you can't function and you are constantly sick with infections that won't clear up.

Hi Karen,

Medicine is not an exact science, but is a very logical science. Lab tests should be interpreted in the context of the clinical presentation. Abnormal test results may be a variant of the normal (by definition 5% of the population will be out of range for any given test) and by the same token normal test results do not exclude a clinical diagnosis.

One of my (excellent) teachers years ago, told me (when I was very puzzled by the lab results of a patient)-why do you expect a malignant cell to know which proteins it has to express on its cell surface?

You need a good physician who will meticulously take a full history, examine you, go over all your test results, possibly order more tests and put it all together.
The information we can get on the internet is not always accurate or comprehensive enough, but with that being said, much of what you describe (sadly, including the indecisiveness of your neurologists in the face of severe/life threatening symptoms fits MuSK MG).
The commonly used antibody tests may not be sensitive enough to detect all patients. Other tests are not yet commercially available but possibly those could be ordered by your clinicians.

http://onlinelibrary.wiley.com/doi/1...789.x/abstract

You also have to find the way to better live with your illness,
Take into account that a diagnosis does not necessarily mean cure or even remission.
It is only a tool for your physician to better direct the management of your illness.
Part of MG management, in my opinion, is adequate supportive care. You can receive that with or without a definite diagnosis.

Tracy, I wasn't saying that she or her son had PIDD. She has a complex health status right now and a second opinion from an immunologist is a prudent thing to do. And there are varying degrees of immunodeficiences, as you know. And so many reasons for them!

Karen, Travel right now could be deleterious for you. It's more important that you take care of your MG and get it definitively diagnosed!

I'm sure there is an MG expert you can see in the area first and then maybe ask them if they know a good immunologist (instead of traveling to DC!). Only you can decide what's best for you. Seeing the right specialist is important. I wouldn't want a dentist to do a pap smear or a gynecologist to treat an arrhythmia or a cardiologist to do an EMG or a neurologist to clean my teeth!

Can't anyone refer you on to Dr. Drachman, at the very least?! He's the leading MG expert at Johns Hopkins.

Take care,
Annie

Annie I didn't even see that you suggested PIDD; I was honestly just responding to her own post about her children's medical issues and PIDD.