Severe GI symptoms, as yet unconfirmed diagnosis: Ideas of next steps?

Posted by joha @joha, May 31 6:46pm

Im wondering if anyone can help me. For close to a year now I've been suffering immensely, with abdominal pain, severe weakness, vomiting, appetite loss, weight loss, spasms, alternating constipation and dighreah. Initially my Doctors thought we were talking about IBD, but after having MRI scans, Ultrasounds, Colonoscopy, Gastroscopy that doesn't seem to be the case. Therefore I have been diagnosed with IBS even though the doctor doesn't actually believe its that. Nothing for the symptoms has helped. I am currently awaiting a Pillcam test. In the meantime I am totally at loss

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I would definitely ask them to test you for gastroparesis. Do you have bloating? It took me 4 years to get a diagnosis. I went to many doctors and it took Mayo Clinic to figure out what was wrong.

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The Pillcam gave me the diagnosis. The camera reached a point in the intestine where it would not pass through. Adhesions were present from a previous intestinal perforation due to Motrin. It has helped to understand the issue.

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Hope they can do something to help you and your feeling better soon!

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@loriwho

I would definitely ask them to test you for gastroparesis. Do you have bloating? It took me 4 years to get a diagnosis. I went to many doctors and it took Mayo Clinic to figure out what was wrong.

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Welcome @loriwho, Thanks for sharing your Mayo Clinic experience in diagnosing your gastroparesis. Can you share a little more about your treatment and how it's going?

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@loriwho

Hope they can do something to help you and your feeling better soon!

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Thanks alot!

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@joha, finding answers for GI symptoms can be challenging. You find from the posts in these related discussions that you're not alone:
– Not so sure it's IBS by @katiek78 https://connect.mayoclinic.org/discussion/not-so-sure-its-ibs/
– Mystery abdominal pain by @lookingforanswers2022 https://connect.mayoclinic.org/discussion/mystery-abdominal-pain/

Do you find certain foods or activities help or trigger the symptoms? Do you track your symptoms and possible triggers?

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Have you been tested for nMALS.
Neuro Median Acruate Ligament Syntrom. This is a rare condition but there are many of us out there with it. Most doctors don't even know what it is.
It took me a year for it to be confirmed. I did my own research and it was confirmed with a surgeon who was very familiar with it. Its a very tough surgery but the outcome will give me my life back. I am now 10 days post op and slowly recovering. There is a Facebook page called MALS PALS with the most information you will find because it is actual patient's going thru this. It is a great source of information for other similar illnesses. Mayo clinic also has a excellent website on MALS.
Good luck. I wish you well. I had 18 test, 2 endoscopies, and my gallbladder removed which wasn't the problem. Have patience and keep pursuing. You shouldn't have to suffer. 🙏

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@colleenyoung

@joha, finding answers for GI symptoms can be challenging. You find from the posts in these related discussions that you're not alone:
– Not so sure it's IBS by @katiek78 https://connect.mayoclinic.org/discussion/not-so-sure-its-ibs/
– Mystery abdominal pain by @lookingforanswers2022 https://connect.mayoclinic.org/discussion/mystery-abdominal-pain/

Do you find certain foods or activities help or trigger the symptoms? Do you track your symptoms and possible triggers?

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Lactose intolerance maybe?

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@colleenyoung

@joha, finding answers for GI symptoms can be challenging. You find from the posts in these related discussions that you're not alone:
– Not so sure it's IBS by @katiek78 https://connect.mayoclinic.org/discussion/not-so-sure-its-ibs/
– Mystery abdominal pain by @lookingforanswers2022 https://connect.mayoclinic.org/discussion/mystery-abdominal-pain/

Do you find certain foods or activities help or trigger the symptoms? Do you track your symptoms and possible triggers?

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Yes, Definitely! Spicy, and fatty foods as well as high fiber foods trigger symptoms. My consultant though prescribed me some fiber powder because of my constipation. As He seems not to cate too much about me and I'm throwing up practically everything I eat (I've lost about 19 kg) I'm moving on to a different specialist. I would like to come to mayo but I live in the UK…
After checking up what loriwho suggested it definitely seems like gastroparesis!

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@joha

Yes, Definitely! Spicy, and fatty foods as well as high fiber foods trigger symptoms. My consultant though prescribed me some fiber powder because of my constipation. As He seems not to cate too much about me and I'm throwing up practically everything I eat (I've lost about 19 kg) I'm moving on to a different specialist. I would like to come to mayo but I live in the UK…
After checking up what loriwho suggested it definitely seems like gastroparesis!

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I’ve noticed after all the standard testing is complete and they can’t find anything they write you off as ibs

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@grace29

I’ve noticed after all the standard testing is complete and they can’t find anything they write you off as ibs

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Yes I've heard that from a few people…

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@colleenyoung

@joha, finding answers for GI symptoms can be challenging. You find from the posts in these related discussions that you're not alone:
– Not so sure it's IBS by @katiek78 https://connect.mayoclinic.org/discussion/not-so-sure-its-ibs/
– Mystery abdominal pain by @lookingforanswers2022 https://connect.mayoclinic.org/discussion/mystery-abdominal-pain/

Do you find certain foods or activities help or trigger the symptoms? Do you track your symptoms and possible triggers?

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Try eating gluten free. It works for me.

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