Auto Immune

[Rose1516]

What causes so many auto immune disorders in one person and could it be a sign of blood cancer and how do you get someone to test you for it?  I have severe allergic reactions to most any medicines that I take even when I go to the emergency room with an allergic reaction sometimes the medine they give me triggers a worse allergic reaction rather then fix the one I have.  Also have been dignosed with autonomic dysfunction, Discoid and SLE lupus and Celiac disease.  I can't take any medication to treat my symptoms because of the allergic reactions cause me to go into shock and extreme trouble breathing.  My allergy specialist say they have never heard of such bad reactions to any medicine (even vitamines), my rhumetologist says all she can do is monitor my symptoms, heart doctor says may have to put in a pacemaker but I terrified of an allergic reaction to the medicine needed to take for the surgery but they say I can be put on preventive medcines to keep the body from having the allergic reactions during the surgery.
I have to keep my children trained on how to use my epipens in case of an emergency but I hate having to put this responsibility on my children if something bad happened they may feel like they didn't do something right.   The fear in my daughters face when she seen me gasping for air crushed me I feel helpless and can't get any answers.  Just Doctors saying they have never heard of this or don't believe it which was the case at the emergency room twice until they seen it for themselves.  Please if you have any answers or suggestions as to how I can get help please let me know.  

[fastback]

good morning. Late to the party in commenting about your post. Although I am not a physician the research is pointing to a latent ebv or viral infection for autoimmune and many other disorders. For example,  Google searches on RA, Lupus, MS,Crohns, IBS are filled with research articles linking EBV latent viral loads to these disorders. I personally believe the way out is to test for viral loads of CMV, EBV Paro and if positive began a program to reduce viral loads to help your immune system keep the virus in check and hopefully overtime eliminate it from your body. I am sorry you are having to deal with these conditions. My best to you.

[Rose1516]

I will check it out! Thanks

[Heiferly]

The link to the autonomic clinic at Vandy is on this page if you want to try that route:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

[Rose1516]

Thank you for your help I will check into it.  I have been to several different allergy specialist at Vanderbuilt and they don't know either so maybe I need a different department.  Thanks Again

[Heiferly]

I really don't know anything specific to say, because the combination of diagnoses and symptoms you describe does indeed sound rather unique.  In cases like that, my best recommendation would be if it's at all possible that you find a way to get to one of the nation's top diagnostic hospitals; presuming you're in the US, that would be something like the Mayo Clinic in Minnesota, for example.  Here is the link to the rankings of the top hospitals in the US for this year:

http://health.usnews.com/articles/health/best-hospitals/2009/07/15/americas-best-hospitals-the-2009-2010-honor-roll.html

As a sidenote, out of those top 21 on the honor roll, only the following have autonomic clinics (if you want to make sure the hospital you go to has facilities to include autonomic testing or specialists targeted specifically to autonomic dysfunction as a part of your diagnostic workup):

2 Mayo Clinic, Rochester, Minn.
http://health.usnews.com/health/best-hospitals/mayo-clinic-5000000

4 Cleveland Clinic
http://health.usnews.com/health/best-hospitals/cleveland-clinic-foundation-6410670

16 Vanderbilt University Medical Center, Nashville
http://health.usnews.com/health/best-hospitals/vanderbilt-univ-medical-center-6521060

17 NYU Medical Center, New York
http://health.usnews.com/health/best-hospitals/nyu-langone-medical-center-6212925

19 Mount Sinai Medical Center, New York
http://health.usnews.com/health/best-hospitals/mount-sinai-hospital-6213140

Do you think you might be able to make it to one of those hospitals?