Diagnosis... FINALLY!

[ArinMelissa]

Hello friends,
I just posted in general discusssion but ...
Just a word of encouragement for all of you that are still struggling with a diagnosis. I've gone through over 10 (yes, 10) physicians, 3 of them told me I had no clinical issues and should consider mental counseling, and the other 7 just looked plain confused after spending a half hour with me. After 3 years of doctor visits I found an 80 yr old physician who believed in me.

No one knows your body like you do, and no one here wants to be sick and to hurt all the time. If you know you're sick, be firm with your doctor. Push for the tests. Insist that they help you.

There still is no "visual" evidence of Crohn's in my intestine, though I received a diagnosis today. Sometimes I feel like I've been through it all in my efforts to get a diagnosis for this disease. If I can help you- if there's anything I can do- feel free to contact me... and fight like &*(L!

 

[Gculk]

How were you diagnosed, if you don't mind me asking?

Was it blood tests or biopsy or what?

Nathan

 

[ArinMelissa]

Hey Nathan,
I've been tested via colonoscopy, endoscopy, pill-cam (2 yrs ago), prometheus panel and ASCA many times. They all came up negative except for one blood test, ASCA. It's testing the amount of saccharomyces cerevisiae antibody in the blood at both IgG and IgA levels.
Anything over 25 is considered positive for them both. Mine came in at 38.4 for IgG and 91 for IgA. My symptoms are right in line with Crohn's. My physician says that is enough information for a 100%, firm diagnosis. It's definitely a hard to diagnose disease and if you don't have a cut-n-dry case you've got to find a physician that is willing to work a little(lot) harder for it. Good luck!

 

[Gculk]

Huh, no way.

Cool.

How are they treating ya?

Nathan

 

[ArinMelissa]

I've already been through flagyl, prednisone, methotrexate and Humira. I'd been diagnosed with "seronegative spondyloarthropathy" (in the Crohn's family) so that's why I'd been through a lot of the Crohn's drugs. They mostly made me sick and I've weaned off of them all for now. I'm on a pretty strict lifestyle regimen- 10 hrs of sleep a day, no dairy, no gluten, nothing processed, low stress routine. It's working for now! What's your situation?

 

[Gculk]

Why the 10 hours of sleep? Is that just what your body needs? Not saying anything, just asking.

Did you get symptom relief from Crohn's medicine? Or only from your current regimen?

I'm undiagnosed, chronic constipation and lrq pain w/ infrequent bleeding/bloody mucus.

Nathan

 

[dannysmom]

Thanks for the update. Were you able to try all those medications prior to your dx? My son tried some Crohn's medications without a firm diagnosis ... but they either did not help or made things much worse. I hope you contiue to feel better.

 

[JuliInCA]

Hey Nathan,
<<snip>>They all came up negative except for one blood test, ASCA. It's testing the amount of saccharomyces cerevisiae antibody in the blood at both IgG and IgA levels.
Anything over 25 is considered positive for them both. Mine came in at 38.4 for IgG and 91 for IgA.

First, congratulations on your long awaited diagnosis! Way to hang in there, and you are right, we know our bodies, even when others may think we're crazy.

I also wanted to add how ironic it is that it all came down to a blood test, and your persistence in explaining that what you were going through is real.

Hope your treatment goes well!

Juli

 

[ArinMelissa]

Thank you Juli and Danny's Mom!
It's strange to think about being "grateful" for a chronic disease diagnosis but for folks like us a firm diagnosis provides peace of mind and direction.

Nathan- I don't know why I sleep 10 hrs a night! I just seem to need that much. As for why I got to try the meds before the diagnosis, it's a little complicated. Basically, the GIs could find nothing wrong in my intestinal tract, but my rheumatologist was able to find evidence of "seronegative spondyloarthropathy" which is a broad term for a group of 5 conditions that relate to Crohn's. I had eye inflammation, joint pain, fever, fatigue, weight loss... all of which are symptoms of seronegative spondyloarthropathy. I also tested for a positive ANA, which signals a disfunction of the immune system. If I hadn't had those symptoms/results, I wouldn't have been able to try Humira or Methotrexate.

 

[Gculk]

Ok, fair enough, was just trying to make sure you weren't resting your back too much. Back issues are aggravated by lack of movement.

Interesting case. Hopefully it all works out well for you!

Nathan

 

[Lustforlife]

Thanks for the update. Were you able to try all those medications prior to your dx? My son tried some Crohn's medications without a firm diagnosis ... but they either did not help or made things much worse. I hope you contiue to feel better.

Danny's mom - may God bless you. It really is uplifting to me every time I see a mother's love for their child who is sick on here.

It must be especially difficult to be twice diagnosed and still not have many answers after some years. Sometimes I think about my mom (I'm early 20s, she is helping me through this for now), and worry that she will get tired of me being ill and break, though I know she loves me just as much as you love Danny. I think she will be able to see it through, and I am so thankful for her, as I am sure Danny is so thankful for you.