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MCTD (Mixed Connective Tissue Disease)
Autoimmune Diseases | Last Active: Dec 16, 2024 | Replies (226)Comment receiving replies
Your case is interesting. I started having severe dizzy spells, heat flashes mixed with chills, skin break outs, extreme fatique. At first, I thought I was going through early menopause based on the symptoms. When I don't feel well, I am out for the count, literally no energy.
I have several drs running several tests which all come back as normal. Then one test showed positive for Shogrens (not sure of the spelling). Saw a rheumatologist and he said I scored positive but too low for shogrens. He did a saliva test and blood work again and it came back as normal this time. I can also take allegra which relieves the symptoms so according to the rheumatologist, no shogrens.
My allergy dr thinks I may have hives. I took 2 more tubes of blood and now he thinks it may be Mixed connective tissue syndrome. I am fatigue, dizzy, etc but the other symptoms I really don't have.
I was sent to an ENF which after several balancing tests and a brain scan said I have a 23% loss in my inner ear on the left side thus the source of my dizziness and balance issues. This makes sense since after I work out, I am too dizzy to move. Heck, I can be sitting and get dizzy. They have me on clonazepam to take a night and seems to be working. But, if I wake up dizzy, I have nothing to help me during the day.
This all started with severe skin break outs everytime I ate. I can take one bite of food or a sip of a beverage and my head is spinning, my skin breaks out in rash looking lines and/or spots. The only things I am safe from is water, unsweet tea, and diet soda. I tested negative for food allergies, pollen, nature, and actually only allergic to dust (after being poked several times).
I've had a nasal MRI, breathing tests, and another round of 10 tubes of blood for various tests only to be informed this past Wed that everything was normal.
I am quite frustrated as to what is going on with me. I too am very active, travel for my company weekly, in school full time, and stay busy busy. I am wondering how your MCTD was diagnosed and if your symptoms progressed over time. Do you think it came about with diet or certain foods?
I am also curious as to which foods help / hinder these symptoms. I heard various kinds of berries help as well as rice, fish, cinnamon, flex seed.. does all this really work?
Anything you can offer would be greatly helpful and appreciated as I am frustrated yet anxious to find out what is going on with me.
Thanks.
Replies to "Your case is interesting. I started having severe dizzy spells, heat flashes mixed with chills, skin..."
Hi @barblacanne,
I'm so glad you've returned to Connect! Thanks for the update; how are you doing?
Hallo i was diagnosed with mctd 6years ago and doctors were confident it would go into remission but never happened. I see rheumatology,cardiology,respiratory, E N T, podiatry ,pain clinic and endocrine. Now my lungs still continue to regress. Am on multiple tablets now I have a suggestion of chemotherapy to start soon. Am feeling hot all the time and dizzy. Pain management i suppliment with mindfulness. I work fultime 10hrs a day (as a nurse). I do feel frustrated but now i live for each day and try to be positive. I was angry for a few years until i saw it was upsetting my children. Now we talk about it and they know when I am not so well.
I tried flaxseed it made me bleed very heavy and continuosly for days.
Am still trying to find solutions but please try to be positive there are no quick solutions to this disease.
it would be good to test the thyroid the TPO antibody to make sure you don't have Hashimoto's thyroiditis and to do an EKG to make sure the electrical system is intact
Did you ever take antivert or have your ENT do specific maneuvers to get crystals of inner ear back in place? Antivert worked for me.
Hi
I have Sjogren's too, its now called "Sjogren's Disease"
For information, there is a foundation. Here is the link: https://sjogrens.org/
Hope that helps.
Good luck!
I did an exclusion diet called Auto Immune Protocol diet for 60 days. Then I tried adding a new food, one per week, to see if any increased inflammation and my CTD symptoms. Sugar is my main problem, causing next day symptoms of fatigue, leg cramps, buzzy numbness in feet and hands. I am also somewhat sensitive to rice, wheat, dairy and eggs, but sugar is the worst.
I have mctd . It began with sjogrens symptoms (very dry mouth and eyes, and a rash on my back). I also had the easily injured skin you describe. Now I also have constipation. Sometimes I wonder why doctors put people through all these tests. Plaquinil delt with the dryness, but does little for the fatigue and lightheadedness. I went to a top rheumatologist. He didn't need all these tests. He did blood work: no sjogrens antibodies despite the symptoms, yet very high rheumatoid antibodies : thus the diagnosis of MIXED Connective tissue Disease, and being put on plaquinil. He didn't need 10 tests that fit an out of the book profile. MCTD is an OVERLAP disease...thus MIXED symptoms. Some people will show some lupus, scleroderma, or other autoimmune rheumatic symptoms. The fatigue takes a lot of of me so I only do what I can and an motivated to do. Even hobbies, walking, playing guitar, and concentrating can exhaust me, so I don't overdo. Yet, I am grateful to not have autoimmune like some people I know, who have much worse symptoms. I've only had 2-3 brief flares, so I have cause to be grateful. There's cause for hope: about a third of patients stay stable and one third have remission. After 10 years post diagnosis, 80% are alive and hanging in there. So don't give up, and make sure you have a top rheumatologist.
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I received tremendous help from the pain clinic at Mayo Rochester, was referred there by a spine doctor at Mayo who was very good. You could try that route. I apologize I meant for this response to go to the following comments.