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 requested an appointment with Mayo Clinic and was declined. Apparently there are several collagen based syndromes -including Marfans but few people specialize and we still don't know who to go to for a Genetic test to determine specific type. My daughter is 22 and some types are very life limiting and some you should never get pregnant, we were told to see a Rheumatologist-but literature suggest you need someone who knows and specializes in collagen based syndromes-anyone able to help??

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@snowaries

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.

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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.

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@powerbest

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.

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Hello @powerbest, welcome to Connect. I can understand your frustration dealing with this terrible disease and applaud you for being an advocate and searching for solutions to help treat the disease. I don't have MCTD but do have a few other disorders including polymyalgia rheumatica which is currently in remission. I was reading an earlier post by @kanaazpereira where she mentioned the following information that may be helpful.

The Connective Tissue Disorder Clinic diagnoses and coordinates care for people affected with inherited or genetic forms of connective tissue disease
https://www.mayoclinic.org/departments-centers/clinical-genomics/overview/specialty-groups/connective-tissue-disorder-clinic

@powerbest are you able to share your approach to staying positive and trying to find solutions?

John

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I was diagnosed about a year ago. Do you have sjogrens due to it? How did you know it was MCTD? I k ow I have had it for a few years no one could diagnose it. I would not tell you to aboandone all those medications but I will share my experience. The prednisone made me worse after all. I gained 40 pounds with in 6 months I was sluggish and it sped my heart rate up. I was always hungry. What I find works for me was weaning off of it. I do a lot of natural stuff. Maybe you can share with me your symptoms. Everyone is different. I’m loosing a lot of healthy tissue due to it. My hair is very dry and brittle. My eyes are dry all the time and my mouth. May I also ask if you have lupus or autoimmune? I do! And fibromyalgia.

Write back when you can

Jen

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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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@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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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?

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@lisalucier

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?

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Thanks for hearing me! I have had the flu like fatigue for years since the weekend that Grave's disease hit me long ago. My general Dr. I have gone to for 25 years has told me over the years that the painful lymph nodes are probably harmless as long the pain keeps going away. This new symptom of sun rash has me most concerned now. It doesn't have the bumpyness and itchyness that either a sun allergy to a substance or an autoimmune sun rash would have. Two Dermatologists at the UW didn't know why I had it but told me to just wear hats and sunscreen. I still have the rash, the way it was in pictures after it calmed down for an hour after twenty minutes looking at the sun in July! I have always told my Dr I think I have another autoimmune problem that is milder because of additional symptoms. I know sun exposure it is bad for parts of you if an autoimmune sensitivity-it would be nice to know. I would just wear my sunscreen and hat and be happy if it was harmless. In one paper about UCTD it mentioned several studies of that disease where several more people said they had a sun reaction then said they had the malar rash. Maybe those like me are somewhere in the middle. I am stuck with a rash that will not go away. Red on my checks and forehead white under my nose. Is it harmless? The last Rheumatologist was dismissive (but he doesn't know the rash didn't go away) but I would prefer not to go back. I went to a different Rhuem. Dr several years ago (she was great!) when I got dry mouth but she doesn't take the insurance I have now. I live in a little county in the mountains. A lot of medical groups toward Seattle, the closest populated area to us, no longer take patients for rheumatology from other counties. I will have my general Dr at my checkup next month try to help find me one. That is the symptom that concerns me most. If it is autoimmune why did I start getting this new sun reaction that won't go away if I don't have ANAs anymore? Thanks-wonder if anyone has something similar.

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@bluejean

Thanks for hearing me! I have had the flu like fatigue for years since the weekend that Grave's disease hit me long ago. My general Dr. I have gone to for 25 years has told me over the years that the painful lymph nodes are probably harmless as long the pain keeps going away. This new symptom of sun rash has me most concerned now. It doesn't have the bumpyness and itchyness that either a sun allergy to a substance or an autoimmune sun rash would have. Two Dermatologists at the UW didn't know why I had it but told me to just wear hats and sunscreen. I still have the rash, the way it was in pictures after it calmed down for an hour after twenty minutes looking at the sun in July! I have always told my Dr I think I have another autoimmune problem that is milder because of additional symptoms. I know sun exposure it is bad for parts of you if an autoimmune sensitivity-it would be nice to know. I would just wear my sunscreen and hat and be happy if it was harmless. In one paper about UCTD it mentioned several studies of that disease where several more people said they had a sun reaction then said they had the malar rash. Maybe those like me are somewhere in the middle. I am stuck with a rash that will not go away. Red on my checks and forehead white under my nose. Is it harmless? The last Rheumatologist was dismissive (but he doesn't know the rash didn't go away) but I would prefer not to go back. I went to a different Rhuem. Dr several years ago (she was great!) when I got dry mouth but she doesn't take the insurance I have now. I live in a little county in the mountains. A lot of medical groups toward Seattle, the closest populated area to us, no longer take patients for rheumatology from other counties. I will have my general Dr at my checkup next month try to help find me one. That is the symptom that concerns me most. If it is autoimmune why did I start getting this new sun reaction that won't go away if I don't have ANAs anymore? Thanks-wonder if anyone has something similar.

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I do appreciate the Mayo Clinic. I am 70 to 80 miles from most specialists and this is one site I consult with questions. It would be nice to have a service where you could ask Drs. questions (or have actual visits with specialists) on the computer/phone. Thanks for all of the info on your site!!

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I was first diagnosed with sjogrens, but later found I have scleroderma. CREST. My Rhumatologist advised me to carefully consider the side effects of available drugs and when I felt worse than the side effects would make me, to let her know. Instead I started reading evey book I could find on niutrition solutions for specific illnesses. The swelling joints, aches and pains had been horrible, but gluten free and vegetarian (yes, both) made the most amazing difference for me. I still am trying to get a handle on the GERD (I see you are on nexium).

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@wottone

It can be a scary diagnosis but it is worth the effort to focus on staying healthy. I have co pletely changed my diet and that has helped a lot. I eat organic and have gone gluten free. It has helped with the pain and definitely improved my energy levels. Reducing stress is very important as well. Everyday is a new day and on the low energy days I focus on spoiling myself and being lazy. I also have a family doctor who is very supportive. I did see a naturopathic doctor and learned a lot on reducing inflammation in the body. I did not purchase everything they suggested but I learned a lot. Dr Perlmutter has many articles on line and has written “The Grain Brain” which helped me on my gluten free quest to better health. Keep searching and I hop you find positive support and answers. It’s worth it.

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I also wnet gluten free for my scleroderma and added vegetarian. Based on what I read, I suspect vegan would be better, but vegan with gluten free ahs been harder for me to combine. Now I need to get control og GERD, still a challenge.

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@cornflower

I also wnet gluten free for my scleroderma and added vegetarian. Based on what I read, I suspect vegan would be better, but vegan with gluten free ahs been harder for me to combine. Now I need to get control og GERD, still a challenge.

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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.

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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.

Liked by lioness

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@cornflower

I also wnet gluten free for my scleroderma and added vegetarian. Based on what I read, I suspect vegan would be better, but vegan with gluten free ahs been harder for me to combine. Now I need to get control og GERD, still a challenge.

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@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

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@tigerlilly

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.

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@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

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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.

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