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Some of the hardest diseases to properly diagnosis are autoimmune diseases. Having five of these diseases, I have also been through year after year of misdiagnosis. In the intrim I have started a non-profit organziation for people with autoimmune diseases (more than 150 known)
If anyone out there needs our help, just yell.
www.aininc.org
Autoimmune Information Network
877-AIN-4900
Hyperthyroidism Autoimmune diseases Iritis Dizziness Chronic pain Diabetes Pain Lupus Spondylitis Fibromyalgia Sarcoidosis Vitiligo Graves' disease Floaters
Thanks for reminding us of the trouble diagnosing these problems. I heard on TV recently that 90% of autoimmune problems affect women. I know it took 10 years for doctors to diagnose my disease-anklylosing spondylitis-I was told it was psychosomatic for these 10 years. Now there is a blood test to check for the gene B27 to detect A.S., along with Chron's disease and iritis which very often accompanies A.S. Lately I have come in contact with several people who have debilitating "fibromylagia" which may also be one aspect of an autoimmune disease. It can be so frustrating, I know. Thank goodness we are not alone.
That is true. So many people suffer with these diseases. We work hard to make sure that they don't have to struggle longer with doctors.
Thank you for your comment. If I can ever help...just yell.
Barb :)
I have also found that autoimmune diseases can disguise other diseases. I had a positive ANA titer (reflecting autoimmune) presumably due to Hashimoto's Thyroiditis, the most common form of low thyroid problems. Doctors saw this and insisted, repeatedly, that I had fibromyalgia. But my symptoms were different than most fibromyalgia patients, and I finally discovered on my own that I had Cushing's Disease because of a benign tumor in my pituitary gland.
Pituitary disorders, like many autoimmune disorders, affect the entire system of the body , so if an autoimmune-disease diagnosis does not ring true for you, you may wish to see an endocrinologist as well as a rheumatologist...
Ellen
Caring Counterparts
I've got this and wonder if you have any info on it. The three things I've got so far are Reynaud's, sclerodactyly and telangectasia. Am beginning to feel like I've got esophageal disfunction as well. Take NO meds so far as my doctor told me anything I take is gonna have side effects and then I'll probably need to take more meds f. those, etc.
Would appreciate any info you've got on this disease. Thanks.
I have had what they call an auto-immune disease for 16 years it started after my son was born,it started with floaters in my eyes,heart palpitations,chills dizziness burnin on urination thirst and hungar with a negative diabetes test over the years the symptoms have gotten worst i now have an irregular ekg,and it seems like this disease affects every organ in my body.FINDINGSa positive ANA test,shogrens,fibromyagia,iga nephropathy,ethlers danlos type 2,i have frequent bladder infections i do have a vitamin d deficiency and a high platlet count at 500.I dont know what else to do,i feel like im dying and im scarred.i am at the end of my rope
I was tickled pink when I went to thebrick website and received an e-mail saying they have 6 folks with eosinophilic fasciitis and they would be contacting these people to see if they would share their info with me...I have been searching for months; after all I knew I wasn't the only person on the planet with this stuff..thanks to thebrick for such a fast reply to my e-mail...feeling so alone with your disease is sometimes worse than t he disease itself...hopefully I will be hearing from some of these folks and we can compare symptoms, etc.
It's hard enough to cope with bizarre things going on in your body all the time and chronic pain. BUT, not knowing why or what it is sometime seems like the hardest part of living with an undiagnosed chronic illness.
I know at times I've have felt I could cope with being told I had something fatal, that it would feel better than not knowing what was going on and what the future held for me. And, that it would be better than people thinking I am a hypochondriac.
Even now that I am on a medication that is alleviating 95% of my past symptoms, I still would like to know what it is. Is it fatal? You can't help but think the worst.
I was diagnosed with Sarcoidosis 25 yrs ago. It supposedly resolves itself in a couple of years and does not come back, when it comes on very quickly, like it did with me.
But, for the past 10 years I have suffered with more and more symptoms. I have seen many Rhuematologists, and a nuerologist. I've had many tests. And, for the past 10 years, they have insisted that the Sarcoid is not "active'. Well, now finally my current Rhuematologist admits "it could be the Sarcoidosis." He doesn't seem as concerned with the diagnosis as I am though. He seems satisfied if he can alleviate my symptoms.
Well, now I have new symptoms and I'm going to try to push up my next appointment and see him tomorrow.
All we do agree on is that I have some kind of auto-immune, systemic, inflammatory disease. He's positive it's not RA. I'm wondering now if I might have Lupus and if there is something he's thinking that he's not telling me.
I didn't ask him about Lupus, the last time I saw him, because I didn't want to sound like a hypochondriac.
I do believe everything happens for a reason. But, I don't know where all this is taking me.
I think I'd like to be involved in research to help figure out these problems we suffer with.
Ya know, there are no Drs. who specialize in "Auto-Immune"? Or, systemic illness for that matter. You have to see a team of people who each focus on a different part of your body.
I think the drs. that are focusing on auto-immune problems are all in research, you can't go see them.
Strange. Isn't it?
Diane
Hello, I have hyperthyroidism and Graves disease 'also have vitiligo. Is there any people who have both diseases?
can't connect to the auto immune website. please check the url
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