MCTD (Mixed Connective Tissue Disease)

I want to change my eating habits but I go back to the food I normally eat. I went to a health food store and bought Kombucha Clear Mind and it taste good. It is fermented and good for digestion. I got several vitamins too.

After reading countless books I found Nutritionfacts.org which I find very helpful. He also published a book this year entitled How Not to Die which is a real eye opener about nutrition.

@cornflower I just started and have been vegetarian ,I cheat with chicken at times though , glad to hear your doing well on gluten free.A friend told me about bread he said nuke it for 15 seconds before toasting ,its tolerable this way ,he,s right

@tigerlilly Good for you ,our food is so important for our health Sauerkraut and dill pickles are in the fermented class also .Ginger is also good for your tummy Good for you

From what several doctors advised me, do not stay long on Prednisone ! even though it works, and from personal negative experience with Amitriptiline, try Nortriptlyene instead...these meds have several uses such as for nerve related treatment, not just or only for depression. Similarly Plaquenil has other uses than what originally it was found to help with (tried but it did not help with my symptoms which are more auto-immune/ arthritic in nature.) Verify your bone density/ calcium levels every so often for side effects of the meds can be significant. It is a journey to find meds that are useful and to stay current with the changes in medicine/ technology for our body's ills. I find it necessary to seek at least another expert's (preferably at respected regional medical college for their clinic Professor's) opinions.

I have no diagnosis as yet. My sx are extreme fatigue, brain fog, peripheral neuropathy, and just generally do not feel well. My ANA was positive as well as antiRNA . CREACTIVE PROTEIN SLIGHTLY ELEVATED.All other components of the panel were negative. Magnesium was slightly low. B12 , CBC and Tsh were normal SED RATE NORMAL. I don't feel like doing anything. I seem to get stressed easier. I AM hot at times cold at others, but generally notice intolerance to heat. Thoughts?? My rheumatology appointment is pending.

Hello @lucindaj1, welcome to Mayo Clinic Connect. I'm sure you will feel less stressed when you finally figure out what is going on with your health and get a diagnosis. There is another discussion here on Connect which may be helpful to you. It does mention some of your symptoms.

Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
-- https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

You mentioned that you have brain fog and peripheral neuropathy along with extreme fatigue. Are you on any medications for these symptoms?

I was taking Cymbalta and Neurontin-- they may have helped with the neuropathy . however, I think they only added to the brain fog. I am not sure. I had negative blood work at the time that these were started.

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.

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?