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MCTD (Mixed Connective Tissue Disease)

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

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@bluejean

Uctd? I have battled the after effects of Grave's disease for almost 20 years since I was 39. The endocrinologist told me (after two years) that I am among the group of those with this disease that continue to feel bad after it and I would never feel better that I did that day. And he was right. Over time I found the words brain fog and chronic flu like fatigue accurate and they describe it! I like a small number of others with the GD had ANAs. My forehead muscles seemed to slide down my face and sag over my eyes. I had to have eyelid surgery years later and the eye Dr said an autoim. disease can attack your forehead muscles. He said if it tested neg you could still have it. When the Grave's Disease hit me like a ton of bricks in 1999 the lymph glands in my neck were so painful they felt on fire! Grave's Disease does not have this symptom. They have flared off with pain every few months now for 20 years. And it gets hurting at the inside legs/hips where I just found out I have more lymph nodes. I in the beginning had blood tests for other autoimmune diseases too but they said negative. My cousins on my Mom's side have Sclera Derma, Raynard's, My cousin and Aunt have Lupus,two other cousins also have Grave's and one has Juv. diabetes. I know Lupus has swollen lymph nodes but I just didn't have all of the joint problems so I didn't look into it much then. I got back to riding my horse a little and about every 3rd time the inside (by the bone) of my hips got really sore or sometimes from climbing stairs. They still do off and on sense then although there is no RA in the joints. I had very dry eye from Grave's disease but just a few years ago I started getting dry mouth too. I learned that you could have another autoimm. disease even though you have neg test results. I went to a nice Rheum Dr who checked me for Sjogrens. The scan of the neck to check the saliva glands was fine but the Dr said that the lymph nodes look funny on the left. They happened to be hurting on that side at the time. The Rheum Dr said my organs were ok but I could still have a mild Sjogrens. I have some worstening Nuero. problems and have battled GERD for years. I have worked as an Ortho. Lab Tech for 37 years with silica/pumice. I read recently that it can effect some autoimmune problems. I have coughed more and got asthma worse for years. I went to a pulmonary Dr who took xrays and could find only mild asthma (It gets a lot worse sometimes) at that time. I just read silica in your lungs sometime requires further tests then xrays to find. I struggled to keep my business opened for 20 years but had to retire earlier this year. Last Spring I had a horrible asthma attack for 3 months. In June I went to Hawaii with my niece. We stayed with her friends and only went out a little each day with my fatigue. I had been there a lot in the past and covered up with a hat and a high sunscreen. But I wanted to go snorkeling again and maybe get a touch of color. Went to the beach for 2 hours. Maybe 20 mins of sun on each side and then thick strong sunscreen before snorkeling for a while. I had been to Hawaii over 30 times and had never gotten a blister but that night my back was badly burned and covered with blisters. Covered up good the rest of the time. As I walked by shops with my hat on two people tried to sell me something for Rosacea. I somehow had gotten a funny little sunburn through my mask snorkeling. Just covered up until I went home. Peeled a thick layer but still had a bad sunburned looking red back for two months. My general Dr gave me some cortizone pills and my back faded some. After Hawaii I covered up and used a different sunscreen. The demalologist Drs said I was allergic to something in the sunscreen I used in Hawaii and that could have caused the bad burn. I had to know if I had gotten a real allergy to the sun or just the suntan lotion. I went out into the sun one morning in July and looked up at it with my eyes shut for 20 min. My face was beet red with a white patch under my nose. I was told that was a sun rash. The Derm Drs couldn't figure out why. That rash calmed down some but I still have a version of it when I am active or wash my face with that white under my nose since July (5 months). My allergy Dr did a test for lupus and said I had a positive test. But it was a high postitive test for RNP. The ANAs I had tested with 20 years ago are now gone. I went do a diff. Rheum Dr because of insurance and he did tests and told me about MCTD but didn't think I had enough positive blood tests. He was unkind and disagreed with everything I said. I read about the UCTD and would like to talk to another Rheum. Dr about it sometime. Th dr. said if the rash was from an autoimmune problem it wouldn't go away until the Dr does something. 5 months later and it hasn't gone away. I My rash doesn't have the bumps and itching I have read about but with my Lymph and few other long term problems I wonder IF I could have a mild version of UCTD. There are no medications that could cause it this sun allergy. I wish there was a satellite Mayo clinic here in Washington. Anyone know a good Rheum Dr in WA state?. Kind of want to know if the sun is doing me harm. Anyone had similar symptoms?

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Replies to "Uctd? I have battled the after effects of Grave's disease for almost 20 years since I..."

Hi, @bluejean, and welcome to Mayo Clinic Connect. That is indeed challenging you've had to deal with aftereffects of Grave's disease for almost 20 years.

Right now, with the various symptoms you mentioned, which is most troublesome for you?