MCTD (Mixed Connective Tissue Disease)

Posted by EllashaB @ellashab, Oct 3, 2011

Ok, here goes my story….4 Weeks ago I was diagnosed with Mixed Connective Tissue disease…I am normally a busy busy person, I work full time as a police officer, volunteer at my church, work a lot of off duty, and I have Three Boxer Dogs that I show, and I’m married…so I have a lot going on and this has pretty much put a stop on everything…I’m on 30mg of Prednisone, Plaquenil, Imuran, and Amitriptiline (for depression, anxiety), and Nexium twice a day…Some days I’m fine and other days I can’t get out of bed either because I’m so tired or I’m having a flare. I would just like to talk to other people who have this disease and who can relate to me. I feel like I’m losing my mind and body for that matter…..Is it always going to be like this? How do I slow myself down? The concept just seems so alien to me….HELP

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.

@lucindaj1

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.

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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.

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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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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?

Hello, @beekb – I would like to add my welcome to Connect along with @lisalucier and others. I have no experience with what you are going through other than the feeling of confusion trying to understand medical condition summaries. When I review mine after an exam I always have questions…what does this mean? etc… I try to make a list of the questions I have so that I'm ready when I have my next appointment and I take the list with me so that I don't forget to ask the doctor. If they give me an answer I don't understand I ask them if they can give it to me in layman's terms. Sometimes I will message my Mayo Care Team through the patient portal with a question if I don't have an upcoming appointment and they have been very responsive.

I would definitely try to get them to answer any questions you might have probably starting with your biggest symptom/concern as suggested by @lisalucier.

@lisalucier

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?

Jump to this post

Thank u for your response. The insomnia, anxiety, night sweats upon early wakening, chest swelling/bloating despite wt loss and depression are the worst right now. I can take the back pain and the worries about the things they found and sure it is exacerbating by not sleeping more than a few hrs a night on med. I also worry about the medications and supplements I’m taking and the effect on liver. Like does fenofibrate cause the copper in the peripheral heptocytes? Or Wilson late onset -I am a researcher so look up things. But my anxiety prevents me fr articulating as well as I might. I had postpartum depression 20 years ago and on setraline for most of those 20 years. Last Oct with the fibroscan result I, to my folly, went off it. Back on and waiting for it to work. Using sleep herbal teas, lavedar oils and lotion, valerian and melatonin as in the past. Trying to walk a little and get sun. Appetite coming back and eating healthy, drinking lots of h2o. Working 3 days – fantastic employer – helps to be in land of living. Good support fr fam and friends. Made appts here at home to help get answers.

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