Inconclusive and lost. Four misdiagnoses'

[Kiki Q]

I have been going through the same problem now for a year without diagnosis. It has become increasingly difficult for me to even go to the doctors office without bursting into tears because they have no idea what's going on in my body.
I was first in the hospital for abdominal pain. It was awful and they did an ultrasound and said that it was inconclusive but that it may be ovarian clots.
Needless to say that was a misdiagnosis.
Then I went to the ER later, wailing in pain, to be told that it was colitis.
Then I went to my primary care weeks later and they said I had celiac.
Then two days later my gastrointerologist said I had Crohn's.
Did a colonoscopy that ended up fine. Then took biopses which were inconclusive. Every stool sample possible was taken. Then they did an MRI.
The MRI was relatively clear except for inflammation and an intussuception.
Then did the Prometheus test, and it was inconclusive. So i was told that they dont know so they are to treat me for ibs. They have had me on meds for months and the pain won't go away. Now it's my abdominals, back, joints and now I'm having trouble breathing and I'm feinting randomly.
I went to the doctor today and had an attack that made me have a spasm in my diaphragm.
What do I have to do to get a diagnosis? I feel so helpless and alone, especially because now I'm missing out on school, extra curricular activities and everything I used to enjoy.

 

[araceli]

I am sorry you are not getting any answers. Can you go to a rheumatologist for your back and joint pain? The only thing I can tell you is to keep looking for answers, sometimes it takes a while to find a diagnosis. Don't loose hope.

 

[Kiki Q]

I am sorry you are not getting any answers. Can you go to a rheumatologist for your back and joint pain? The only thing I can tell you is to keep looking for answers, sometimes it takes a while to find a diagnosis. Don't loose hope.

Thanks so much araceli I appreciate that. I'm working on staying positive as best I can. I will talk to my primary care about a referral to a rheumatologist.

 

[Maudddy]

Heey Kiki,

How did they make the diagnoses of Colitis and later on Crohns? only on blood and stool samples?
So on the scope they didn't find any inflammations, or they did but they could not make out which IBD it was from the biopsy? Where on the MRI was the inflammation, in the small or large intestines?

Did you have a Calprotectin stool test? This is a good test for looking if you have IBD or not, with healty people the score is very low, but if you have IBD it will be higher, I don't think they can see with this test is you have Colitis or Crohn but they can see if you have some sort of IBD!

Hope this helps, and that you will find answers soon!!!

Maud

 

[Kiki Q]

Heey Kiki,

How did they make the diagnoses of Colitis and later on Crohns? only on blood and stool samples?
So on the scope they didn't find any inflammations, or they did but they could not make out which IBD it was from the biopsy? Where on the MRI was the inflammation, in the small or large intestines?

Did you have a Calprotectin stool test? This is a good test for looking if you have IBD or not, with healty people the score is very low, but if you have IBD it will be higher, I don't think they can see with this test is you have Colitis or Crohn but they can see if you have some sort of IBD!

Hope this helps, and that you will find answers soon!!!

Maud

Thanks Maud. That was very helpful. I had the caloprectin stool test but my GI said the results were not significant. They made the diagnosis for colitis in the hospital from a ct scan but then my GI said that it was not significant. The diagnosis of Crohn's was by my asca antibodies being high but then the scope showed little inflammation which may have been attributed to the preparation. Then my MRI showed inflammation and small bowel loops in the small intestine, and the Prometheus test was ordered, but then came back negative.
Thankyou for answering me, because to be honest have no idea what to do at this point and I could use all the help I can get

 

[Lady Organic]

I'd gather all the reports (CT scan, MRI and colonoscopy) and seek a second GI opinion. You should be able to get copies from all your reports at the archives department in the hospital.
what do you mean by ''inconclusive biopsies''? Clear of any problem or the pathologist was unsure? get this report too.
Are your bowel movements normal?
Do you think that was a panic attack you got at the doctor's office?
sending you my support.

 

[Kiki Q]

I'd gather all the reports (CT scan, MRI and colonoscopy) and seek a second GI opinion. You should be able to get copies from all your reports at the archives department in the hospital.
what do you mean by ''inconclusive biopsies''? Clear of any problem or the pathologist was unsure? get this report too.
Are your bowel movements normal?
Do you think that was a panic attack you got at the doctor's office?
sending you my support.

Thankyou lady organic. I don't think I had a panic attack, I just had a really bad ibd attack or something of the sort at the time I went to the hospital. I have all my reports, so that would probably be a good idea to get a second opinion from another GI. I've also heard that sometimes internists can help too? Would you recommend it or no? Thankyou so much for the support. Like I said, I can use all the help that I can get

 

[Lady Organic]

I would concentrate on another GI evaluation. wishing you well.

 

[Kiki Q]

Thanks so much. Wishing you well also

 

[Lady Organic]

I mention the panic attack because trouble breathing, feeling like fainting and ''brutal diaphragm attack'' could all be expression/signs of panic attacks. When you have these symptoms how long do they last?

 

[Kiki Q]

They are ongoing with my pain mot of the time. I have a constat pain in my abdomen right beneath my ribs and with that I get trouble breathing a few hours at a time. The light headedness the docs said is due to vasovagal syncope because once my pain level peaks, my body reacts by shutting down to stop the pain. The light headedness lasts less than an hour at a time unless I feint in which case I'm lightheaded and shaky for hours afterwards.

 

[Lady Organic]

they also checked your galdbladder and liver?

 

[Kiki Q]

they also checked your galdbladder and liver?

Yes I think they did that when I had my ultrasound done.