Help with rare diagnosis of IgG4 Sclerosing Disease??

[Christie1983]

I have recently been diagnosed with a rare autoimmune disorder called IgG4 Sclerosing Disease. I know very little about it and have had multiple surgeries and have seen MANY doctors regarding it. So far none of my doctors have seen anything like it and the only reason I reached this diagnosis was because one of my doctors reached out to a colleague at the MayoClinic in Rochester, MN who has 8 patients with this disease. I just want help understanding it and maybe to reach out and speak to anyone else that has this as well.

[amymarcinko]

Have you been to Dr. Stone?  I live way up in northern Vt., and for the first two years I was called crazy.  the vision is the worst.  

[amymarcinko]

I've had the orbital problems associated with the disease, and that has been the most incapacitating.  besides being on methotrexate, my doc has suggested something like maybe restasis for the eyes.  but I also get the formation of this film across my eyes which totally makes driving very difficult.  

[MarshaB9136]

I was recently diagnosed with this disease in November.  The leading specialist in the world is Dr. Stone out of Boston, Mass.  I get my treatment at Johns' Hopkins Hospital in Baltimore.

[BreanaNadal]

My husband is suspected of having IGg4 and has been recomended to go to UCLA as well after (6) previous doctors have been unable to help him. Would you mind letting me know who you saw when you went there? I am just trying to find someong who can help him. Thank you so much!

[sstrafach]

I am in the process of being diagnosed With IGg4.  We are waiting for the results from my lymph node biopsy.  Thy doctors at the Lahey Clinic in Burlington MA have been wonderful.  I recently did a biofeedback back session in my hometown to find out what my food intolerances are and I have been slacking off on that.  Milk and sugar are high on the list.  After reading your blog I am going to start taking my food intake much more seriously.  Thank you for posting!

[Qwerty1594]

51 year old male, newly dx with igg4-rd found because of issues with my kidneys.

Had a biopsy because was having high protein and blood in urine, also experienced vasculitis, sinus issues and over the years had a few lymph nodes removed because if swelling (I was 29 years old when lymph nodes were removed and biopsed but igg4 stain was not defined then so the pathology report showed nothing).

I was (7 years ago) dx with SLE lupus and for a few years was on prednisone for that. But after a few good years of being off of it , symptoms came back but not the positive Ana.

I am on 60 mg prednisone and only a month into treatment so not sure of the next steps. I am convinced that I have had this issue since childhood and am just happy to call it something.

I have no pain, I don't walk around with a burden, I just want to treat and move on! The only struggle I have is keeping weight off but with a strong will and good strong diet I have managed to only gain about 7 pounds so far.