Anyone with similar symptoms & test results for abdominal pain?

Posted by edijoke @edijoke, Feb 6 2:13am

Hi there,

I was just browsing through the internet randomly and found this discussion page for digestion issues. I've had abdominal pain problems since 2010. Thankfully I managed to get better after 2 years of constant pain and every test done possible. My problems have returned for the past 2 months, albeit, my pain isn't constant and does go away unlike before. My pain is usually a 4/5 out of 10 and can last for a few hours until it subsides. It is usually around the belly button area(mainly above, but sometimes below).

I have done almost every test possible. I've done an ultrasound, CT scan(with contrast), MRI, endoscopy, colonoscopy, endoscopic ultrasound, cystic fibrosis testing, gastric emptying test, etc. Some of those tests done at Mayo Clinic itself in 2010 in Minnesota. All of those tests were normal. The only thing that's ever been shown in my testing, has been a slightly elevated lipase and amylase. It led doctors into thinking I have pancreatitis, but they've looked at my pancreas extensively(especially during the endoscopic ultrasound at Mayo) and the pancreas looks completely normal. I recently went to the ER and did another blood test + CT scan with contrast. The pancreas was again normal(as was everything else), but my lipase was slightly elevated at 150(normal levels being 90 for that hospital).

I went to a GI doctor today and they told me it could be an abdominal migraine, or a potential vascular problem involving the abdomen. They did schedule a HIDA scan(to check the function of the gallbladder), as that is ironically the only test(or one of the only), I have not done. They want to see the results of the HIDA scan before progressing further and they told me to try out some more bentyl for pain(something I took before and didn't notice relief from it).

Most pain medications do not help. Even back in 2010 when my pain was constant and more severe, I tried almost everything possible in terms of medications, but nothing helped. The only relief I get from the pain is from natural remedies. Tea and 1 small teaspoon of apple cider vinegar mixed with some lemon and baking soda(this helps me the most). I don't have acid reflux like I did in 2010. It's mainly the pain now. It can be described as a squeezing pain just above my belly button mainly(sometimes lower). I do tend to also notice relief when I empty during a bowel movement. I empty usually once a day. I don't have any nausea and vomiting. I don't have a loss of appetite either. No fevers as well.

I am wondering if there's anyone out there with similar symptoms with similar test results to me. Every test I've done comes back negative(thankfully) with the only thing showing is slightly elevated lipase and amylase. I am 26 years of age. I have been dealing with anxiety since July of 2019, so I don't know if that may have caused my gut to act up a bit.

I am just really curious if there's anyone out there with a similar situation to mine in terms of symptoms and test results. Please let me know if you've managed to find out a solution to your problem, if there is someone out there.

Thank you for reading.

Hi, @edijoke Welcome to Connect. You have been going through this pain for quite a while. That's amazing that it has yet to be diagnosed. Your mention of abdominal migraine caught my eye, I believe my son had them when he was pre-puberty — typically if a child gets them pre-puberty they often do not get migraines after puberty.
I wish I could say something to help you but your situation is extremely complex. I just wanted to welcome you and to hope that you do get responses from someone who may have something or have had something similar. It sounds as if you have gone to the best possible places trying to find a diagnosis, you must be very frustrated. Hopefully, you will find that one doctor at some top-level hospital, preferably a teaching hospital, who will finally figure out what the problem is. Mayo is ranked #1 but there could be a doctor at one of the other top-ranked hospitals who would see something that a prior doctor did not.
I know the frustration of not being diagnosed, but thankfully I only dealt with it for about a year and a half.
JK

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@edijoke – I’m so sorry that you have to suffer like this at your age. I have been through years of abdominal pain since my 40s- pain that at times would numb my brain. At that time I only knew about gallbladder pain and postop clogged bile ducts as well as some possible pancreatitis pain. About that time I also was diagnosed with GERD. So far I knew triggers etc. Later on my pain and general well being changed.
I don’t think you mentioned if your pain in any way is associated with eating. Also, does the pain radiate to other areas? Any GYN problems?

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@astaingegerdm

@edijoke – I’m so sorry that you have to suffer like this at your age. I have been through years of abdominal pain since my 40s- pain that at times would numb my brain. At that time I only knew about gallbladder pain and postop clogged bile ducts as well as some possible pancreatitis pain. About that time I also was diagnosed with GERD. So far I knew triggers etc. Later on my pain and general well being changed.
I don’t think you mentioned if your pain in any way is associated with eating. Also, does the pain radiate to other areas? Any GYN problems?

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Thank you for the kind words. I don't believe my pain has any connection to what I eat.

The pain doesn't radiate to other areas. Back in 2010, it did radiate to my back. Now it does not thankfully. No GYN problems(I'm a Male).

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@contentandwell

Hi, @edijoke Welcome to Connect. You have been going through this pain for quite a while. That's amazing that it has yet to be diagnosed. Your mention of abdominal migraine caught my eye, I believe my son had them when he was pre-puberty — typically if a child gets them pre-puberty they often do not get migraines after puberty.
I wish I could say something to help you but your situation is extremely complex. I just wanted to welcome you and to hope that you do get responses from someone who may have something or have had something similar. It sounds as if you have gone to the best possible places trying to find a diagnosis, you must be very frustrated. Hopefully, you will find that one doctor at some top-level hospital, preferably a teaching hospital, who will finally figure out what the problem is. Mayo is ranked #1 but there could be a doctor at one of the other top-ranked hospitals who would see something that a prior doctor did not.
I know the frustration of not being diagnosed, but thankfully I only dealt with it for about a year and a half.
JK

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Thank you for the welcome and kind words.

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@edijoke

Thank you for the kind words. I don't believe my pain has any connection to what I eat.

The pain doesn't radiate to other areas. Back in 2010, it did radiate to my back. Now it does not thankfully. No GYN problems(I'm a Male).

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@edijoke – In your posting you mentioned the doctor saying it could be abdominal migraine or an abdominal vascular problem. To look for vascular abnormalities an abdominal Doppler ultrasound is done to detect blockages etc. if the test shows something abnormal a CT angiogram with contrast is done. The tests you already had would not necessarily show this.
This happened to me- a celiac artery blockage from pressure by a ligament – the median arcuate ligament. The Median Arcuate Ligament Syndrome, abbreviated MALS, is rare. However, I found many with this syndrome here on Connect.
It can’t hurt to ask for the abdominal Doppler ultrasound.

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@astaingegerdm

@edijoke – In your posting you mentioned the doctor saying it could be abdominal migraine or an abdominal vascular problem. To look for vascular abnormalities an abdominal Doppler ultrasound is done to detect blockages etc. if the test shows something abnormal a CT angiogram with contrast is done. The tests you already had would not necessarily show this.
This happened to me- a celiac artery blockage from pressure by a ligament – the median arcuate ligament. The Median Arcuate Ligament Syndrome, abbreviated MALS, is rare. However, I found many with this syndrome here on Connect.
It can’t hurt to ask for the abdominal Doppler ultrasound.

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Thank you for that information.

My GI doctor mentioned doing a CAH test(I think it was called this) to check for vascular problems, but they did ask of me to give them the CT scan. They said they could check for vascular problems there from the CT scan after a radiologist looks at it.

However, I'll definitely keep the abdominal doppler ultrasound in mind. I don't think I've done this test to my memory, but I might have.

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@edijoke

Thank you for that information.

My GI doctor mentioned doing a CAH test(I think it was called this) to check for vascular problems, but they did ask of me to give them the CT scan. They said they could check for vascular problems there from the CT scan after a radiologist looks at it.

However, I'll definitely keep the abdominal doppler ultrasound in mind. I don't think I've done this test to my memory, but I might have.

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@edijoke – Thanks for the update! I’m not a specialist in this but I have learned from my own experience. I was tested at a well known major medical center- the abdominal Doppler ultrasound was abnormal but it was thought to be a false positive. The doctor also checked regular CT and MRI I had with radiologist and it looked like there was normal blood flow. Much later, at another hospital, I learned it has to be a specific CT angiogram of the abdominal blood vessels to show where the problem is.
Therefore, if it was a CT with contrast and not a specific angiogram, they may say it’s normal. The Doppler ultrasound is a good test to start with, non invasive.

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A section of your bowel may be pressing on a nerve. I have bloating and pain in that area, too. My doctor thinks perhaps my problem with the gut might be causing liver inflamation which can also put pressure on a nerve in that area. Another doctor years ago thought my IBS irritations were putting pressure on a nerve causing nerve irritation as far up as burning in my neck when when the IBS kicks in.

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@astaingegerdm

@edijoke – In your posting you mentioned the doctor saying it could be abdominal migraine or an abdominal vascular problem. To look for vascular abnormalities an abdominal Doppler ultrasound is done to detect blockages etc. if the test shows something abnormal a CT angiogram with contrast is done. The tests you already had would not necessarily show this.
This happened to me- a celiac artery blockage from pressure by a ligament – the median arcuate ligament. The Median Arcuate Ligament Syndrome, abbreviated MALS, is rare. However, I found many with this syndrome here on Connect.
It can’t hurt to ask for the abdominal Doppler ultrasound.

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I recently had a CT Angiogram. I also have a Urostomy. CT showed that I have Parastoma hernia with small bowel now present.
I’m currently awaiting Dr Appt with Vanderbilt Digestive Disease Clinic in Nashville TN

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I have had somewhat similar symptoms since January 2014. Had countless tests, from numerous CT's, Ultrasounds, MRIE, EGD, 3-colonoscopies, etc.. It has been so frustrating and somewhat depressing because it has affected my life tremendously. I am 61 years old and feel like I will never get to the bottom of it. I live in Tucson Arizona and have to admit that Northwest Medical Center has not been very good at any kind of diagnosis. Nearly all their employees and internal services are sub contracted out to include radiology. In February 2019 I went to ER with the pain pretty bad on my right side abdomen once again where it always has been for the most part and had yet another abdominal CT Scan and this time they flagged mild ascending colon wall thickening. I thought this would be the smoking gun and someone would come up with a diagnosis. They had me see a sub contracted gastologist who sent me for an abdominal ultrasound and a gallbladder ultrasound and then performed another colonoscopy at Northwest Medical Center and he said all was good in the report, follow up in 5 years. Took no biopsies in the area of the wall thickening. In fact no samples anywhere. It was more like a screening and not a diagnostic colonoscopy. I went and saw him once after the fact in April 2019 and he claimed he saw no wall thickening on the CT Scan. I had the Hospital Review the Radiology Findings and they claimed they stood behind their findings. I got no where with them or the gastrologist. It has been a frustrating 6 years of lots of tests and labs, etc., but no diagnosis, yet the problem just slowly progresses. At times the pain will radiate to my groin area, back, shoulder blade, arm and down my arm, but the only finding so far is ascending colon wall thickening, or should I say disputed finding. I have lost faith in the medical system and Have come to believe it is all about money and not helping the patient for the most part anymore. All these Hospitals and Medical Centers are getting bought up by Medical Investment companies and sub contracting all their internal services out which has appeared to hurt the system tremendously.

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@edijoke – I’m checking back on your attempts to get a diagnosis. Did you get a chance to ask doctors specifically about tests that evaluate your abdominal blood supply? I think I mentioned the Doppler ultrasound and CT angiogram.

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@ger1986 – Welcome to Connect! I really understand what you have been going through- abdominal pain and no diagnosis after so many tests and procedures. Good that you found this discussion with other members with similar problems.
I had mentioned in conversations with other members that it can be useful to evaluate the abdominal blood supply. There could be pressure on an artery or other abnormality that could cause pain.
The common test to evaluate this is an abdominal Doppler ultrasound. You did have ultrasound done, but did you also have the Doppler for the blood flow?

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Hi @ger1986,

I’m so sorry to hear about the pain that you are experiencing–@astaingegerdm mentioned,, you’ve come to the right place to talk with people who’ve had similar experiences with health and to get support from members who understand what you are going through.

I also thought you might be interested in viewing this video, on the Gastroenterology & GI Surgery Page where Dr. Amy Oxentenko talks about complexities of chronic abdominal wall pain: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/chronic-abdominal-wall-pain/

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@astaingegerdm

@edijoke – In your posting you mentioned the doctor saying it could be abdominal migraine or an abdominal vascular problem. To look for vascular abnormalities an abdominal Doppler ultrasound is done to detect blockages etc. if the test shows something abnormal a CT angiogram with contrast is done. The tests you already had would not necessarily show this.
This happened to me- a celiac artery blockage from pressure by a ligament – the median arcuate ligament. The Median Arcuate Ligament Syndrome, abbreviated MALS, is rare. However, I found many with this syndrome here on Connect.
It can’t hurt to ask for the abdominal Doppler ultrasound.

Jump to this post

Hello,
I am new to this group. Was just diagnosed with median acute ligament syndrome. I have had issues with this for 20 years. It was minimal and not constant. 2 years ago I moved and the pain became more frequent and severe. With a new Dr; I kept pushing for an answer. 2 days ago I had 2 different ultrasounds and MALS was found. I am now awaiting for a referral to be ok’d by my insurance so I can see a vascular surgeon. The articles I have found online seem to be from 2 years ago and not a lot of information.
I am hoping to connect with someone who has had the laparoscopic surgery. I am now 73 years old and have read that at this age surgery isn’t always successful.

REPLY
@16goodfood

Hello,
I am new to this group. Was just diagnosed with median acute ligament syndrome. I have had issues with this for 20 years. It was minimal and not constant. 2 years ago I moved and the pain became more frequent and severe. With a new Dr; I kept pushing for an answer. 2 days ago I had 2 different ultrasounds and MALS was found. I am now awaiting for a referral to be ok’d by my insurance so I can see a vascular surgeon. The articles I have found online seem to be from 2 years ago and not a lot of information.
I am hoping to connect with someone who has had the laparoscopic surgery. I am now 73 years old and have read that at this age surgery isn’t always successful.

Jump to this post

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