Interstitial Cystitis (IC) Support Group

This is interesting I have not heard or read that but in my recent blood work I was flagged for an auto immune disease. A few different doctors did a lot of digging and I did many more rounds of blood work to rule out different types of auto immune diseases and nothing has still come back. They are perplexed about this, but if what you said is the case it makes sense! Thanks for the info I will do some more research and see what I come with...will let you know if anything pans out.

An ANA test-- Anti Nuclear Antibody test is given and can be abnormal with several auto immune disorders. I have one doctor who tests me because my results keep doubling, and another doctor who says it is pointless--that it doesn't mean anything. Fibromites commonly have high ANA test results, I'm told.

Perhaps we're all dealing with this a decade or so before they tie it all together and find a solution! Let's hope they hurry!

I had a discussion with a PA who was treating me with bladder infusions. She is part of a bigger group of IC researchers. This was about 18-24 months ago. She told me they were getting some results that looked as if IC, IBS and Fibro were connected as an auto-immune that was not yet discovered. My Mom and sister both have Fibro and IBS with the possibility of IC. Neither have tested for it. I don't necessarily have Fibro but it is a possibility. I talked with my gastro Dr. the other day and he mentioned it as the medical community is now thinking these to be related as a nervous system/auto-immune not yet defined. Unfortunately, this doesn't change any course of treatment. My Mother was diagnosed with Fibro just over 20 years ago when many in the medical community though it was a psychosomatic disorder.

My urologist told me that IC was and auto immune disease. i was diagnosed a little over a year ago. i have a lot of pain about half of the time....right now i for the past 2 days it has been awful. i even started throwing up today. whether it is autoimmune of not it is a hard disease to live with. i also have Addison's Disease which is definitely a autoimmune diasease.

I was told that it was an auto immune disease and that possibly has something to do with the central neverous system. Doc said they can only treat symptoms because they have nothing else conclusive. Unfortunately people think you are crazy because your are always in pain and complain but no one understands.

my dr had a long talk with my husband and myself, and he did say that in his opinion he felt that IC could very well be an auto immune issue.

Thanks for all the responses.....I believe we are on the brink of a new treatment for IC.... I should probably start a new topic here, but has anyone heard or been enrolled in the Lyris trial?

Beth

I could see where this definitely could be a "Super Disorder" especially since I have all of the conditions listed. It would make perfect sense to me that they would all be related.

I believe IC is an autoimmune disease and it seem like I've read it somewhere before or maybe the doc asid it idk. Anyway I wanted to ask, what is lyris? Never heard of it.

My urologist told me in 2001 that she thought my IC was due to an auto-immune problem because a few months prior I had developed allergies to latex and parabens. So long as I avoid caffeine, avoid baths, use All Free & Clear to wash my clothes, take Citracal and Hydroxyzine HCl 25 mg I am symptom-free.