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-   -   How long?? (https://www.justmommies.com/forums/f379-autoimmune-diseases-and-disorders/2368914-how-long.html)

rageybug July 9th, 2011 04:09 PM

How long??
How long did it take you to get diagnosed with your autoimmune disease?

amberjolie July 10th, 2011 03:56 PM

Re: How long??
That's a tricky one...I have always had fatigue issues since I was a teenager, so I don't know if I had this then and it just wasn't diagnosed or not. If that is the case, then it was a good 15 years.

If I go from when I got terrible ulcers on my fingers until a diagnosis of CREST, that would be about 8 months or so. Then I was diagnosed with Sjogren's about 4 months after that. But then the rhematologist finally settled on a diagnosis of primary Sjogren's instead of CREST (although I'm wondering if I do have CREST as well after all), which was about 15 or so months from the ulcers.

Oh, and I was diagnosed with Hashimoto's thyroiditis, which is auto-immune, before I even had any symptoms for that, about 4 1/2 years ago.

So I guess I really can't say how long it took to diagnose in my case, or even if I'm fully diagnosed yet, because it wasn't so clear cut.

That didn't really answer your question, did it? :p

EmG July 12th, 2011 03:59 PM

Re: How long??
My autoimmune kidney disease was diagnosed pretty quickly with a biopsy. So only 2 months. However, even though the biopsy showed lupus nephritis, they didn't diagnose that until 5 years later.

MauMama July 22nd, 2011 11:11 PM

Re: How long??
I've had issues since I was a teen and before that as a child. Lots of fevers, always sick. Always on antibiotics. I was struck down with Mono at the age of 13 and it took months to recover. I don't feel I was 'right' for a long time after that. The disease was causing scar tissue in my uterus and I didn't have a laparoscopy done to remove it until I was 22. So a long time coming for that.

I didn't get formally diagnosed with TRAPS until 2009. I've since had it taken away and then given back. My gene tests were negative, but they only tested for 3 altered genes, not the entire spectrum of the disease.

I've read most women don't receive a diagnosis until 5 to 7 years after the initially seek medical assistance.

Celena August 4th, 2011 03:38 PM

Re: How long??
I would hace to agree because I've been in pain in my joints and have issues since I was an early teen, but I had this crazy bad flare where I couldn't even get out of bed because I was in so much pain. That was in 07 I believe, it's been a while... it didn't take long for that dr to throw me into a FM dx without testing further which has now screwed me for the rest of my life with that health & life ins are ridiculously high.

Years before that in 2003 the dr in WA dx me with u/c because of a flare I was going thru with that. And I'm having a bad bout right now too.

bettyearl October 22nd, 2011 08:43 PM

Re: How long??
Interesting - I am just beginning the start of figuring out what is up with me. I hope it doesn't take years!

pumpkinpie24 October 23rd, 2011 02:47 PM

Re: How long??
Crohn's Disease here....my first symptom was bleeding. I went to a doctor within a month, got referred to a GI within another month, but it took a lot of exams and a couple colonoscopies before a definite diagnosis came. I'd say it was close to a year and a half.

~~MaRiE~~ November 17th, 2011 05:47 AM

Re: How long??
Mine was around 6 months or so to be diagnosed with arthritus

~.Sally.~ December 11th, 2011 03:05 PM

Re: How long??
About two months to be diagnosed with Crohns disease, started with major symptoms mid to late June 2010, diagnosis by colonoscopy and biopsy end of August 2010.

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