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MCTD (Mixed Connective Tissue Disease)

Autoimmune Diseases | Last Active: Sep 18 10:07am | Replies (225)

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@beekb

I went to mayo to get a definitive answer but I feel left in the dark. Here at home I had a fibroscan last fallthat showed Nash stage 3 so began wt loss plan. Lost 20 between oct and March. My husband switched insurance so we could both go and have a work up at mayo. I Found a research trial comparing Mre and biopsy so enrolled. Good news is the Nash better, stage 1-2 but finding of inflamed bile docs with copper infiltration is confusing. Only abnormal was ANA blood test 3.2 u. Also visited gen internal med for a work up with insurance. Cardiologist found mild to moderate aortic regurgitation, mild stenosis and an ascending aortic dilation of 41 mm. After the biopsy I began to have body sweats, flushing in my face after eating followed by diarrhea and I expressed this concern to the hepatologist who had me give a stool sample and said there was no bacteria or parasites. Changed my eating to small meals but I’m still having issues after I eat certain foods. Lost another 12 pounds since the biopsy April 10,not intentional but have no appetite. Wondering if I have an insulinoma -grandmother had one I found out. Had glucose of 40 after fasting 17 hrs before CTS surgery in December so they had to give glucose. All my adult life I’ve had High triglycerides PCOS insulin resistance but thankfully no diabetes. Anyway this mayo visit has triggered depression, insomnia and anxiety - now back on antidepressants (I stupidly stopped him last fall after the fibro scan thinking any medicines would be bad for the liver). (PSA: Next week my local clinic enrolled me in the diamond program for depression management that links a shrink, your local doctors and a case manager and a nurse. If people are looking for something like this it is offered in many Minnesota and Wisconsin clinics and is free apparently.) Anyway I also see a local neurologist next week for the two spinal hemangiomas ( I knew I had one in my neck and had treated that with exercise and physical therapy) but then the lower back hemangioma showed up on the MRE.) I’ve had si joint and low back problems for a year or more. In the big picture I feel there must be a vascular disorder and insulinoma. I do not drink, never have taken illicit drugs or opioids but do use cbd oil and occasional cannabis (not used in a while). I take daily aspirin, vit e , lovaza and fenifibrate for the high tg. I have a niece with a connective tissue disorder so wondering about that too. Have been a pretty happy camper with a good family and faith but I’m a train wreck right now. Hugs to the suffering.

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Replies to "I went to mayo to get a definitive answer but I feel left in the dark...."

Hello, @beekb - I wanted to add my welcome to Mayo Clinic Connect. You'll notice I moved your post here to an existing discussion in the Autoimmune Diseases group where many members are talking about multiple conditions. If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

That does sound very difficult for you as you try decipher what may be going on. I'd like to introduce you to @johnbishop @lucindaj1 @lioness @bluejean, who may be able to provide some support and input as you seek answers to the abnormal ANA blood test, inflamed bile docs with copper infiltration, and wonder about vascular disorder, insulinoma and connective tissue disorder.

At this moment, @beekb, what symptom is the most difficult for you?