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Forum: Autoimmune Diseases and Disorders


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July 9th, 2011, 04:09 PM
rageybug's Avatar Platinum Supermommy
Join Date: Aug 2008
Location: Ontario, Canada
Posts: 6,633
How long did it take you to get diagnosed with your autoimmune disease?
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July 10th, 2011, 03:56 PM
amberjolie's Avatar Super Mommy
Join Date: Nov 2006
Location: Ontario
Posts: 884
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?

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July 12th, 2011, 03:59 PM
EmG EmG is offline
Super Mommy
Join Date: Aug 2010
Location: Reno, NV
Posts: 767
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.
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July 22nd, 2011, 11:11 PM
MauMama's Avatar formerly La_Sirena
Join Date: Apr 2011
Location: Aotearoa
Posts: 317
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.

Jen + Matt
Parents to Sophie, the Wondergirl
Asperger's Syndrome
Joint Hypermobility
GERD & Constipation

Angels Autum & Isla (2007)
+ 7 others (2002 - 2011)

Mama with arthritis & connective tissue disorder called TRaPS
I've been charting since Jan 16, 2001 and TTA since April 2007.
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August 4th, 2011, 03:38 PM
Celena's Avatar Proud JM hostess
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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.
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October 22nd, 2011, 08:43 PM
bettyearl's Avatar Beth, mom to 4 boys
Join Date: Jan 2009
Posts: 4,919
Interesting - I am just beginning the start of figuring out what is up with me. I hope it doesn't take years!
happy about life in general
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October 23rd, 2011, 02:47 PM
Mega Super Mommy
Join Date: Mar 2009
Location: Minnesota
Posts: 1,185
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.
DS born 9/2/09
DD born 3/20/12
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November 17th, 2011, 05:47 AM
Platinum Supermommy
Join Date: Apr 2008
Location: North east england
Posts: 9,224
Send a message via MSN to ~~MaRiE~~
Mine was around 6 months or so to be diagnosed with arthritus
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December 11th, 2011, 03:05 PM
~.Sally.~'s Avatar Platinum Supermommy
Join Date: Jan 2006
Location: UK
Posts: 7,822
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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