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Undiagnosed for years and desperate
Hi everyone. My husband has been sick for so long and we really need to figure it out. He is 42yrs old and before all this was healthy. It started out as what he describes as a very tense stomach, almost like an extreme nervous stomach feeling, around 10 yrs ago. Dr. Diagnosed him with anxiety and IBS and it was manageable for many years. (We dont think it was ever amxiety or ibs) Now in the last 2 years it has become debilitating. That feeling is there constantly 24/7. It wakes him through the night. He also gets pain in the uller left abdomen. He is not anxious at all but yet the feeling persists. Now also in the last 2 years a myriad of other symtoms have come up. Daily diahreah, joint pain, muscle pain, nausea, light headedness, bradycardia (low 40's), low diastolic blood pressure, drenching night sweast, 50 lb weight loss in 3 months , insomnia, syncope, brain fog, extreme fatigue. He was diagnosed with hypothyroidism and sibo over a year ago but even with treatment for both his symptoms are only getting worse. He has had scopes both ends, pill cam, endoscopic ultrasound, gastric emptying, echocardiogram, holter, cardiac stress test, mri of pancreas and surrounding organs, ct of abdomen pelvis and head, numerous ultrasounds and blood work and nothing come up that explain his symptoms. Only small things such and moderately elevated lipase for many years, a thyroid nodule, sinus inflamation on his head ct, high carotene he is orange, low B12, just slightly low hemoglobin, a slight enlarged spleen that is now normal sized, slightly enlarged liver, small kidney cyst on left kidney. We recently sent his blood to Germany to Armin Labs and yersinia and cmv came up but can that really last that long? His stool test was negative for yersinia as well so that is confusing. We are at a total loss. I know the sibo amd hypothyroidism can cause many of his symtpoms but I really feel there is a root cause to all of this. Any suggestions? We have near reached the end of what his gi specialist, endocrinologist, rheumatologist and cardioid can offer. Any ideas on the constant tight stomach as that is his most debilitating symptom. Thank you for your time.
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I have no answers. However, I have enormous sympathy. This sounds beyond miserable. I hope your husband finds some solutions soon. Everyone must be exhausted. Good luck.
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5 ReactionsThank you. If I really think about it, it's honestly shocking that this is still our reality right now. I just try not to think about it too hard and neither does he I don't think because it's pretty discouraging.
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2 Reactions@vanessab Hi Vanessa, and welcome to Connect. I too have no answers, just concern and sympathy. I know what it’s like to not have a diagnosis, but thankfully I only went through that for about a year and a half. After that I vowed that if I ever again did not get a more timely diagnosis I would head to Boston, (55 miles away) and stop wasting my time up here.
I hope you can find a doctor who will figure this out. I think being a good diagnostian is a special skill, obviously that is what you need.
At this point in time, with all he has been through, I think the tight stomach could actually be from stress related to it. Anyone going through all of this would be highly stressed.
Please let us know when someone does figure this out.
JK
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1 ReactionHello @vanessab,
I’d like to introduce you to fellow Connect members @pagray24 @nanny23 @sousou @edda @michrn @astaingegerdm @nobletype @hokiefan @carolel @nrg33 @catherinelewis – all of them have shared very similar experiences, and I’m confident they will join in with some more insights.
I’d also like to direct you to these discussions; feel free to click on the links, read through them, and participate wherever you feel comfortable:
– Chronic Abdominal Pain https://connect.mayoclinic.org/discussion/chronic-abdominal-pain/
– Abdominal pain with severe constipation and weight loss https://connect.mayoclinic.org/discussion/abdominal-pain-since-july-2017-with-severe-constipation-and-weight-los/
– Mesenteric Panniculitis or Sclerosing Mesenteries https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/
I realize this might add to the plethora of tests your husband has undergone, but I was wondering if he has been tested for Clostridium difficile (C. diff)?
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2 Reactions@vanessab - I feel so bad for your husband! I went without a proper diagnosis for close to 10 years - then to find out I had 2 rare, not connected GI disorders. OK now. Has he been tested for celiac disease? Many of his symptoms point to that. Celiac is an autoimmune disease, often co-existing with hypothyroidism. Also, have all his pituitary hormones been checked? Food allergies?
Don’t give up. If you have not done so already, consider going to a major university hospital or Mayo Clinic. I went to Mayo for years.
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2 ReactionsThank you for your reply. It sure helps to know there are other people out there that have experience the same long drawn out diagnosis stage and eventually do get a diagnosis. He is negative for celiac, has had a few tests. I don't believe his pituitary hormones have been tested, his endo I believe is of the opinion that there is nothing more than thryroid issue. No food allergies.
We are considering Mayo and he has already been offered an appointment there. I've already sent in all the paperwork and given a date, now just waiting on the estimate of cost and then to figure out where to get that money from. We are in Canada and we're close enough to make the drive to Rochester. I'm just so afraid that they won't find the cause and then what is left?
You are completely right about the waste of time! We are about ready to shell out the money to try Mayo clinic. With every test though there is a new hope that "this is the one" "this medication is going to work" and then you wait for the results and then get an appointment and they say no, all clear, it isn't that but let's test this and then the cycle starts all over again and poof like that is been 2 years!
He and I are certain it is not stress related. Even with being off work now for over a year and zero stress and he is really not an anxious guy as it is, is never goes away, it is constant for 10 years. It may be the same feeling as someone with anxiety but it is not tied to his emotions, it is purely physical. Also he has gone to counselling as well as tried some anti-anxiety medications and they didn't help. I can't wait until someone figures it out and it will all just make sense! Thank you
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2 ReactionsThank you for the links! I'm only part way through the first one and it has so many similarities. He is neg for C-diff.
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1 ReactionHi Vanessa, as I am looking for answers for myself, I came across your post. Did your husband eventually get a diagnosis for his symptoms? I sure hope so, and that he’s doing better. On my end, after a long diagnosis/therapeutic desert crossing, tests results are increasingly pointing towards a mast cell disorder (most likely a Mastocytosis. The cutaneous biopsy came back positive. We are now waiting for the genetic blood work result which, if negative, will lead to the more invasive bone marrow testing). Thanks in advance for your reply.
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3 ReactionsNo, sadly he is still the same 4 yrs later. We did go to Mayo Rochester and they didn't find anything. We were really disappointed with our visit there.
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6 Reactions