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new onset of symptoms
Hi, am new here, looking for answers because I know something isn't right, even though all test results come back as "normal". I was diagnosed with IBS several years ago and have a history of peptic and duodonal ulcers( but none currently) I moved, had to re-establish myself with a new gastro MD who says I actually have Gasteroparesis. NOT IBS. Fast forward to 3 months ago, all of the sudden started having excess saliva when I went to sleep at night, saw an ENT who did 2 scopes in his office, referred me back to Gastro MD, diagnosing me with gastric reflux. In the past month I have had new symptoms of loss of appetite, nausea, weight loss of 7 pounds and pain in my upper abdomen,just above belly button, cramping relieved somewhat by use of a heating pad,( and continued IBS type issues like chronic constipation and feeling of fullness after eating a small portion). Have recently had colonoscopy, CT scan of pelvis with and without contrast, abdominal ultrasound, endoscopy, blood tests, HIDA scan for gall bladder, and a fecal study. All normal results except fecal study shows Noravirus. What the heck is going on? I am not crazy but the tests keep coming back with "normal" results. Am open to suggestions ...(ps have always been careful with diet due to IBS since college, am now 57 and except for these new symptoms, in good health)
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@llkahan - Welcome to Mayo Clinic Connect!
It is very frustrating when all test come back normal -when you definitely don’t feel normal.
I hope your doctors have not dismissed you and continue looking for answers to your complaints.
I’m going to add another possible, but rare, problem called MALS. MALS stands for Median Arcuate Ligament Syndrome. It has many of the symptoms you describe. This illness is caused by a ligament from the diaphragm putting pressure on the celiac artery. The celiac artery sends blood to the intestines and several organs.
Eating a meal puts extra pressure on intestines and other organs- diminished blood flow causes abdominal pain, nausea, vomiting and weight loss. It becomes hard to eat more than a few small bites.
Diagnosis can be made with an abdominal Duplex Ultrasound or CT Angiogram.
Here is a link to a description by Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/median-arcuate-ligament-syndrome-mals/symptoms-causes/syc-20505001
Thank you for responding so quickly ! Am so incredibly frustrated. Am beginning to wonder if i should try to get a consult at Mayo clinic and maybe skip all of the guesses from my current medical provider. How would I go about doing that/does my current provider have to request a consult?
You can definitely request an appointment at Mayo Clinic.
You or your doctor can apply.
Here is a link:
http://mayocl.in/1mtmR63
thank you, have sent request to my MD for test of gastric emptying, i'll see what their response is, If they think that's not necessary, I will seek a new consult with Mayo clinic.
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2 ReactionsHi @llkahan ,
I feel for all you are going through! I'm sorry I don't have any answers, but I can let you know you're not alone - and not crazy! I am 61 and had basically the same as you, except have lost over 20 lbs in the last 6 years. I had most of the same tests plus a gastric emptying, which also came back normal 🙄. Had not seen an ENT, but that is scheduled next week. My PCP just says IBS can change and also be in upper gut, but the pain and pressure in my upper gut and inability to eat sure doesn't feel like IBS.
I hope you get a gastric emptying study so you can at least rule that out.
Hang in there!
sorry to hear you are feeling some of the same issues I have, but glad to hear I'm not the only one... I just requested the gastric emptying test but haven't heard back from the MD yet, I have an appointment on the 24 to "discuss any test results" (all normal except for the recent Noravirus diagnosis ). I agree, that upper gut pain sure doesn't feel like the usual IBS stuff ! I hope you get some relief.
update.. had gastric emptying test yesterday with scrambled eggs(4 hour test), Diagnosis is Gasteroparesis. I have been following a low residue diet for several months but symptoms did not subside. Now have instructions to stay on low residue diet, no new medications were ordered, no follow up appointment has been suggested. I am supposed to be scheduled for an abdominal MRI, can't get Dr's office to respond to my call asking if I should still have it done (?). Still feeling bloated and a bit frustrated. I have read that an individual should NOT stay on a low residue diet continuously due to the decreased nutrition it offers. Any ideas out there from other folks dealing wit the discomfort?
Thank you, this forum is so helpful in helping me keep my sanity (instead of doubting it ) !
I have renal disease, diabetes, and gastroparesis. I am forced to stay on a diet of liquids, purees, soft foods. I cannot tolerate animal products except eggs so must use Boost, peanut butter, eggs, juices, baby food, applesauce, very soft breads, mashed avocado, etc. Eating is an unpleasant chore and the aftermath frequently is discomfort if not actual nausea. This is no way to live.
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2 Reactions@llkahan
At least the diagnosis of Gastroparesis was confirmed, but you have been on a low residue diet for months without improvement.
You could get a second opinion.
I’m still not convinced that they evaluated the abdominal blood flow - if there is any blockage in arteries there definitely would be painful digestion.
When I went to Mayo with my abdominal pain complaints, the first test I had was a Duplex ultrasound of the abdominal blood vessels. It showed that I had a problem.
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1 ReactionHi again.. just re read your response as I was at a gynecology appointment today and NP thought the gateroparesis diagnosis was maybe not all that was going on...She also suggested second opinion, Mayo in Jacksonvile or down to Charelston. Am sure they have not checked abdominal blood flow, that would be a specialized test they just don't seem to do here in Savannah... What did they do for the restricted blood flow? ( and does the referral process go more smoothly if I can get my primary care MD to request the consult vs me requesting it directly to mayo clinic?) thank you for your time (and thank you for everybody who shares their journey on this forum, it's so helpful to feel less alone)
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