Anybody Initially Misdiagnosed?

[Kristtene]

I'm curious if anyone was initially misdiagnosed. This includes the "I think you might have..." by your doctor. In my case the GI doctor told me, as I was being prepped for the colonoscopy, that he thought it was a localized intestinal infection, a "bug" as he at first called it. He left the room and his nurse then began talking about IBS. After the colonoscopy the doctor said it could be stress. He sent me an e-mail a few day later and again named infection or stress as causes---this was before the biopsy results came in.

A few days later he called and said, "You have microscopic colitis."

I'm still in learning phase of this; which foods are truly the offendors. I was down to 1-2 bowel movements a day, but today I was thrown for a loop with huge amount of diarrhea as the third bowel movement. It contained the almond slivers I had yesterday, along with a lot of brown-rice grains.

[kimtg68]

Yes I was misdiagnosed multiple times by different doctors. It was just one of those cases where I knew my body was doing something other than what they assumed was going on. I just kept searching out different doctors. When I finally got to the GI I am with now, I told him how tired I was of the previous doc's assuming and needed something more concrete and in tune with what my body was doing. He never once 'assumed' or suggested I had any one thing. He ordered an endoscopy and colonoscopy and promised me he would be thorough. It was after the biopsy results came in that he told me I was positive for H-pylori and he treated me for it. BUT what he failed to tell me was that I also tested positive for MC. After my H-Pylori treatment several weeks went by and I still have issues. My stomach got to hurting SO badly I had trouble walking upright. I went back into him and he THEN tells me I also had MC but he wasn't going to treat it without symptoms!!!OMG! I had had symptoms for nearly a year! What was he thinking? As Tex mentioned some time ago on this forum, always good to get a copy of your test results. Even if you personally can't read them. You can take them to your GP or perhaps even share on here.

It seems many GI think that it's stress or mental in some form. Which truthfully stress and emotions can aggravate things. But there truly is a problem. They just aren't educated enough about it so they make us look crazy! How crazy is that?! LOL

Good luck Kristtene.

[JLH]

I guess I was under diagnosed. GI just found diverticulosis and some polyps. I had to call her some months later to say I was going to become a recluse. Then she did the sigmoidoscopy where I got my LC diagnosis. That was about two years ago.

GI gave me the choice of Entocort or Lialda (like I knew anything about them). I asked if I could make the decision Monday and she said sure, go on the internet. (It was a Friday.) I did and found EnteroLab first thing. Then I set out to find if they were legit and found the PP. By Monday, I was gluten free.

By the time I did my EnteroLab test, I had to eat prunes and prune juice to get my sample!

After doing really well, and thinking I can do this, I started having problems again and suspected soy. Another EL test confirmed it.

[tex]

My misdiagnosis was probably one of the most unusual here - I was misdiagnosed both by my GP, and by the GI doc he sent me to, with colon cancer. They were both wrong, of course, (thank goodness).

Tex

[Stanz]

Kristtene,

Geez, don't even know where to start with all of my mis/dx in the last 15 years alone. I've had everything from psoriatic arthritis, rheumatoid arthritis, MRSA, eczema, chronic UTI's, STD's, spider bites, food poisoning....well, I could just go on and on and reading my medical records is pretty entertaining as a testimony to the idiocy of the medical care I've had.

And then I go back to chronic stomach aches throughout my childhood, appendicitis?, typhlitis?, endometriosis? scar tissue?...much earlier in my life. You kind of get used to feeling like a hypochondriac until you finally get a dx that shows you're not nuts.

Stress - yeah. Feeling crappy all the time is stressful, let's just blame it on that. There's a drug for that, right?

[Pat]

Yes, I was misdiagnosed even with the pathology report staring the first GI doc in face in capital letters, MICROSCOPIC COLITIS. He chose not to tell me MC but told me IBS and for 7 years that is what I was told. I didn't think I fit the symptoms but he was the doctor and I tried to believe him. He retired and my new young internist got the report and had me retested. Of course it said the same thing. Then the nightmare began. That was over 3 1/2 years ago. Medications didn't work. GF, SF, EF, YF, everything free didn't work except fructose free. I now control mine with FF diet and 2 imodium a day. Life is pretty darn good!

Pat

[Gabes-Apg]

I dont think i was ever mis-diagnosed.
I think i was in the too hard basket as i had multiple symptoms and situations going on, and there was nothing abnormal in blood tests etc so it was like, you have a different type of IBS, you figure it out.