Are connective tissue disorders autoimmune disorders? What types are there? Right now, doc has me diagnosed connective tissue disorder not otherwise specified, though she thinks it's possibly mixed connective tissue disease since I have overlapping things. Have to go see different specialist farther away from home, hoping to get better diagnosis, referred by my primary care physician to this new rhumatologist. I really hope the hour drive up there is worth it, though the appointment won't be for another couple months. Have had joint pain and fatigue for last about 15 years, since I was 18. For awhile, the docs thought it was all in my head, and then they thought lupus, then fibro, then lupus, and then fibro again. Now they think it's a connective tissue disorder because of positive ANA, extremely high SED rate of 60, and other positive tests I can't remember everything my head is so swimming but they think i have other organs involved besides the joints. In meantime, doc is keeping me on Lyrica because it has helped with my joint pain and raynauds syndrome symptoms. And am taking ibuprofin for the inflammation. Also got diagnosed with type II diabetes, so doc is focusing on that right now first before the other stuff. *sigh*
I have MCTD with internal organ damage. Mainly the esophagus, and a little valve damage in my heart. Aside from the joint pain, muscle weakness, raynauds, occasional hypertension and headaches I seem to be OK. :) I visit my doc every 6 months with blood work each time. I get an echo of my heart each year. I refuse the esophagus testing because they can't do anything anyway and it is very uncomfortable. I'm on naproxen (pain, swelling) trental (raynauds) lisinopril and asprin (hypertension) plaquinil (anti something) prilosec, prevacid (esophagus) and Vit B complex. I've been told this is forever and never to go off of any of these. (oh boy oh boy) Recently I've been told my muscles are deteriorating and I need to go on a steriod. I'm holding out. I"m concerned about the side effects and that it would be a life long thing also. I've read alot about a fruit named "acia" and I'm going to try that. Don't get discouraged, your not alone. I'm out here.
I am just now researching connective tissue diseases and I don't know alot about it. How were you diagnosed? How do you know you have internal organ damage? What kind of tests? Sorry for so many questions.
In your post above you stated "Now they think it's a connective tissue disorder because of positive ANA, extremely high SED rate of 60" regarding Connective Tissue Disorder. What does ANA and SED mean? Thanks.
ANA is antinuclear antibody blood test. My son was sick with virus for months and they finally did the ANA and it was high so then more blood tests were done. All of it is to find out what autoimmune you have. His white blood count was only a 2. My son too has mctd with fibromyalgia and reynauds but it usually doesnt affect organs until disease progesses. The kidneys and lungs are common ones.
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