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How were you diagnosed?


Forum: Autoimmune Diseases and Disorders

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  #1  
April 9th, 2008, 02:06 PM
::er!ca::'s Avatar Platinum Supermommy
Join Date: Jul 2006
Location: USA
Posts: 36,283
Just wondering what path everyone went down before their diagnosis.

What symptoms were you having?

How long did you have symptoms before going to the doctor?

When did you get referred to a specialist?

What types of testing/labs/etc. did you go through?

How long did it take to get an actual diagnosis?
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  #2  
April 9th, 2008, 02:37 PM
Becca's_Mommy's Avatar Becca's Mommy
Join Date: Jan 2006
Location: Oklahoma City, Oklahoma
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I was diagnosed after having back pain off and on for a few years. It had gotten progressivly worse over a period of a few years and became more constant. I had pain in my hips or sacoriliac (sp?) joints and in my neck quite often. And occationally it would be exceptionally bad. My father has AS and so my mom convenced me (I really didn't want to know) to have the DNA test for the HLA-B27 marker that most people with AS have around October of 2005. After testing positive for the marker at my PCP's office they referred me to a Rheumy who did an examination and x-rays. The x-rays only showed inflamation in my upper spine. I probably would not have been diagnosed so early if my dad did not have AS. They also did a SED rate, but I am not sure what the numbers were. He diagnosed me with AS on December 30, 2005 at my first visit.

I found out I was pregnant on January 17, 2006 andI didn't go back to him until after Becca was born and my symptoms significantly worsened, about a year ago I think, maybe 8 months, I don't remember. I treated with my PCP for awhile after she was born before desiding to go back to the Rheumy to see if he had better options for me. At that time he again confirmed my diagnosis of AS and suggested I may also have Fibromyalgia (SP???) which I am not so sure about that. So I really didn't have to "wait" for a diagnosis. I credit it to a really good rheumy and my father having AS.

Most people spend a lot time waiting for a diagnosis of AS as it is such a rare disease and lots of doctors miss it. I guess I am "lucky" my dad had it.
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  #3  
April 11th, 2008, 04:09 PM
~*Dina*~'s Avatar Platinum Supermommy
Join Date: Mar 2005
Location: California
Posts: 9,925
What symptoms were you having? losing my hair and pain

How long did you have symptoms before going to the doctor? about 3-4 months

When did you get referred to a specialist? right away

What types of testing/labs/etc. did you go through? blood tests & xrays. I've been tested for EVERTHING!!

How long did it take to get an actual diagnosis? they ruled everything out first, then said that it was Autoimmune Disorder and that most likely I will end up w/Lupus which sounds stupid to me, my Rheumatologist says I have fybro, my medical Dr says I dont.
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  #4  
April 11th, 2008, 06:09 PM
Becca's_Mommy's Avatar Becca's Mommy
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So did you get an actual diagonosis? What do they mean you will end up with Lupus?? I swear lol sometimes I wonder about Doctors!


Quote:
What symptoms were you having? losing my hair and pain

How long did you have symptoms before going to the doctor? about 3-4 months

When did you get referred to a specialist? right away

What types of testing/labs/etc. did you go through? blood tests & xrays. I've been tested for EVERTHING!!

How long did it take to get an actual diagnosis? they ruled everything out first, then said that it was Autoimmune Disorder and that most likely I will end up w/Lupus which sounds stupid to me, my Rheumatologist says I have fybro, my medical Dr says I dont. [/b]
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  #5  
April 13th, 2008, 11:52 AM
mjtamjj's Avatar Veteran
Join Date: Feb 2008
Location: texas
Posts: 422
I was diagnosed in 1999, I woke up about 3:00 a.m with a sharp pain in my chest and stomach. I started throwing up alot I couldn't stop and the pain wouldn't go away. Around 8:00 a.m I couldn't take the pain and went to the ER. Doctors keep asking questions and doing xrays and blood test. finally gave me something for the pain because I couldn't take it. I was in and out of conscious for about 3 days. Doctors thought maybe I had ovarion cancer or an AI disease but they weren't sure until they elimainated everything that they thought it was. I had a collapsed lung, water around the heart and my kidneys were affected. After about a week they said I had lupus. I have been seeing a rheumatologist since '99 and a renal specialists on and off since '99. I think I have been really blessed the lupus has been dormant since about 2001, I have pain in my hands and legs but not very much, but dr says when you have lupus you have a great chance of have arthritis as well. I had to change rheumy about 6 months ago and he said he didn't believe I had lupus, because I look so good and haven't had a flare up in so many years. He asked all the questions about how I got diagnosed and what symptoms I had. He order every lab test possibly I had about 15 tubes of blood drawn. When I went for follow up he confirmed I had lupus I was like duh I told you, and he was telling me about the anti cardiolipin. Dr act like we don't know anything.
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  #6  
April 13th, 2008, 03:59 PM
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Join Date: May 2005
Location: VA
Posts: 4,035
I went to the doctor New Year's Eve 2007. I had a bad stomach flu and couldn't stop throwing up. After I was there for awhile I stopped throwing up. I don't know what made the doctor test my thyroid, but I got a call a few days later saying I needed to come in for a follow up. I went and had a few more tests done and they diagnosed me with Graves Disease.

I took the radioactive iodine to kill off my thyroid February 15 2007 and started taking Synthroid in April 2007.
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