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IgG4 disease

Posted , 5 users are following.

carlyone
carlyone

Hi all,

I was recently hospitalized with pancreatitis.  My IgG4 blood tests are above the normal standards. I have several other health problems which seem to be caused by my immune system. Question:  are there any specific doctors or clinics that just deal with autoimmune issues, and know that IgG4 related problems are considered to be one disease?  I live in Ohio, and don't know what kind of doctor to go to. The specialists just want to treat the organ in which they specialize.  Any advice would be much appreciated.

1 like, 8 replies

8 Replies

  • duane26425
    duane26425 carlyone

    Posted

    I've been doing research for a friend who suffers from autoimmune disease, and beginning to think John Hopkins Hospital in Baltimore Maryland is probably the leading hospital in the nation on research about autoimmune problems. Check them out. 

  • Aphra
    Aphra carlyone

    Posted

    Hi love, I'm so sorry your going through this unknow territory. Luckily, I had a relentless GP & Mayo Specialty Hospital to guide us. I have an IgG deficiency, IgG Subclass 1 and IgG Subclass 2 deficiency. Unfortunately my two year old has IgG deficiency as well. But I have other consitions, I believe are all linked.

    They call my IgG condition CVID. I see an Immunnologist. He specializes in the immune system, allergies and much more.

    My two year old sees a Rheumatologist for his IgG disorder. He goes to a speciality Childrens hospital.

    I also see a Rheumatologist as well as doctors who specializes in different bodily system that is affected by my immune conditions. (GI; Nuerologist; Cardiologist) My Primary Doc helps coordinate all the docs, but only if they are willing to work together. Now they share blood work results, discuss medications, because these illnesses do not typically affect only one organ.

    Do you have a GP that can refer you to an Immunnologist or Rheumatologist?

    • carlyone
      carlyone Aphra

      Posted

      Thanks so much for your reply.  In answer to your question, I do have a GP, but am not sure about ones which he would refer me to. No one seems to be knowledgeable about the disease. There are lots of autoimmune diseases, and I am having a tough time trying to figure out what to do or where to go.

      Sounds like you are on the right track. I wish you and your daughter the best.

    • Aphra
      Aphra carlyone

      Posted

      Unfortunately I haven't found a doctor who specializes in Autoimmune Disorders. Doctors are "Practicing Medicine", especially when it comes to Autoimmune Disorders. We've been on this journey for over 5 years and have not found many answers, but always seem to find more issues with my immune system that makes my condition more complex.

      I have searched, asked, researched to find doctors in our area & outside who have any knowledge of my disorders. (Part time job itself) You must be your own advocate. If GP doesn't know who to refer you to, then research & phones calls may help you find the name of the doctor who may help your discover what's going on & how they IgG's play a role in your specific condition. .

      I read that women with Autoimmune disorders can take up to ten years to find the right "combination" of Specialists or to even get a diagnosis. Many people with autoimmune issues have more that 1 disorder. Which makes it even more difficult for yourself & doctors.

      I believe the majority of Autoimmune conditions are complex, unique and 2 people with the same condition can have totally different symptoms, damage & blood work results.

      I wish I could tell you see this type of doctor or go to this clinic. But doctors are beginning to become more informed of these Autoimmune conditions. Doctors are starting to recognize that they affect more than one bodily system. My GP told me when she was in med school, they had 1 chapter about Autoimmune Conditions. Not much research available. Even now, doctors are so weighed down with patient quotas, that taking the time to learn the new developments takes extra time.

      As I said before, you could ask your GP to refer you to an Immunniologist/Allergist to help regulate your IgG levels in your blood. That's who I see for my IgG issues. Rheumatologist could also help you. Don't give up, but also don't expect your doctors to research or refer for you. Be your Warrior!!!

    • carlyone
      carlyone Aphra

      Posted

      You are completely right about the whole situation on autoimmune diseases. You have to be your own advocate and warrior. It is really hard when you are feeling so sick and vulnerable.  It seems like all we do is research, research,

      and more research. We should be paying ourselves!

      Thank you for your support. That really helps. I hope that you and your son are doing better.

    • Sarge13
      Sarge13 carlyone

      Posted

      I'm not sure of your location, but my Immunologist is Dr Karen Morwood of Sunshine Coast University Hospital in Australia. She is very thorough.

  • Sarge13
    Sarge13 carlyone

    Posted

    You need to see an immunologist. IGg4 is just 1 of many Auto-immune diseases. IGg4 is a very rare disorder with very rare symptoms, like pancreatitis and Retroperitoneal fibrosis... Which I have.

    You should be on a strict medical regime of steroids and immuno-suppressant therapy.

    Hope this helps.

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