Go to another neuro. This is outrageous. You need a neuromuscular specialist. I'd also get tested for Lyme disease and all the coinfections as fast as you can.

Karen, There are a lot of reasons for an increase or decrease in the immunoglobulins. I can't believe they didn't do the subclasses for IgG when they found an increase to see if there is a particular subclass that is increased.

These are basic but helpful to some degree. You need an immunologist or a good internist to explain it.

http://kidshealth.org/parent/system/...globulins.html

http://labtestsonline.org/understand...ulins/tab/test

http://emedicine.medscape.com/article/136580-overview

http://www.mayomedicallaboratories.c...erpretive/8160

I really hope that they didn't miss a thymoma. Since it's still growing, that could be a concern.

Johns Hopkins has some of the best MG experts around, allegedly. Why they haven't referred you on to one is bewildering.

You need an EXPERT, like Tracy said. You are sick, need help and some more answers about your health. I am so sorry you are dealing with this. A good doctor makes all the difference in the world. It takes more than expertise to be a good doctor. It takes them being a good human being too.


Annie

great reading, and I did have a reaction to a dose of IVIG in the hospital in January. Hives, itching, redness near the vein site, up the vein at the elbow and redness in the same side of my neck...probably because of the IgA antibodies in the IGG??? I am envious of all of you that were able to have a clear blood test/diagnosis to get the best treatments.
I am hoping that Hopkins can refer me along like you all are doing, ;-)
Thank you for all the information! It makes me really happy that I found this forum and get some new thoughts for my predicament.

Karen, Did I miss something here? You have IgA antibodies? When did they figure that out? Before you had IVIG?

I really think you need an immunologist to consult with.

My last crisis symptoms was 12/31/12, and hospitalized 5 days. Johns Hopkins had done the IFE panel to show changed in IgG and IgA but this wasn't emphasized to be a problem.I had not had an issue with ivig prior to this hospitalization. Reading the websites provided in this forum, the site states the IgA increase can cause anaphylaxis with IGG. I agree with seeing the Immunologist. I am very frustrated that I am thinking and scheduling soooo many Dr appts and trying to get a handle on my symptoms and diagnosis and have had zero help from any doors in ANY way. This confuses them and have told me to go somewhere more advanced because this is a complex case. I really hope to get the facts straight with help, and be able to figure this out. It seems I am the only one who cares!

reading over the IgA decrease meaning IgA deficiency and it gave me symptoms of Primary immunodeficiency disease. These are symptoms I have had all my life, and all 3 children also have them too. I have severe joint damage and arthritis in both knees and carpal tunnel in both wrists. My son is a severe asthmatic and allergic, my middle daughter has gluten allergy, and all three have eczema. I have had chronic sinusitis infections, and bronchitis. I am very excited to see a reason that you showed me Annie!

Karen, Well, I showed you a "possibility" not a reason. I'm not a doctor, just thinking out loud to see if it helps. If it does, great. But you need a doctor to figure all of this out. And, obviously, your kids need to go too! There are some immunologists who see both adults and kids.

Was your child tested for celiac disease (CD)? CD is not an allergy but an autoimmune response where antibodies are created after eating gluten (wheat, barley, rye, oats, etc.).

I am sorry your doctors are not doing everything they can for you. You have more time to think about all of this than they do. No, that does NOT excuse them. They have years of schooling and experience.

You are not doing well right now. You need to rest as much as possible. Your kids need you to stick around! You've had some pretty close calls. Do you have someone who can help you find a good immunologist? They can do all sorts of tests, like those for CD and can figure out the underlying autoimmune issues.

I hope you'll feel better soon. Hang in there.

Annie