mixed connective tissue disease

Posted by charbaby @charbaby, Aug 26, 2011

I have been diagnosed in the last 6 mo. first the labs came back lupus, speckled. No typical butterfly rash on face. The rash was on my chest where I was briefly exposed to sun. I am olive skinned never even had a bad sunburn! They did steroids and that didn’t help. Referred to a derm who did a biopsy of the area involved that came back dermatomyositis, scleraderma. Now the chest rash is gone and I have both arms covered in a raised rash, tissue is broken down on the right arm. Infection set in and I can’t describe the miserable itch. Anyone out there that has anything like this nightmare! I am on methotrexate.

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@katie

This is my first posting and I am not sure that I am doing it correctly. I have recently been diagnosised with an autoimmune disease based on labwork and generalized hives. The hives are miserable and I am on multiple antihistimines. I have not read about any autoimmune diesae that is associated with chronic.hives. They cover me daily from head to toe and my quality of life is suffering. It has lasted 10 weeks now and I am desperate. The referring Rheumatologist (from Immunologist) denied me because I was “inappropriate”. What does that mean? I cannot find anyone that cares about me. I went to this site for support and maybe some answers. I am sure that you all are th real expets. Thanks.

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Charbaby,
First of all, thanks for being my friend and for praying for me. I will pray for you also. Prayer is what has gotten me through this experience thus far. To answer your questions: I am 51 years old. My diagnosis was based upon lab work for (ANA, Compliment tests). I have insurance through the hospital where I work (we are self-insured and I have a 2,000 deductible).I am 2 hours away from both the University of Louisville and Vanderbilt University. I had a biopsy of a hive and the surgeon did not order the right tests on my biopsy, so my initial biospy was inconclusive. I have no Rheumatologist or Dermatologist.The Theumatologist denied my case. I am still struggling to find someone who can help me or even cares to help me. My primary physician is young and new to practice. I have an appointment with him next week to dicsuss where to go from here. I am just struggling as to what direction to take. I am a Registered Nurse with a Doctor of Nursing Practice degree. I believe that my healthcare providers think that I am supposed to know what to do. I do not have a clue about this,as my degree focuses on advanced nursing care, research and education.

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@katie

This is my first posting and I am not sure that I am doing it correctly. I have recently been diagnosised with an autoimmune disease based on labwork and generalized hives. The hives are miserable and I am on multiple antihistimines. I have not read about any autoimmune diesae that is associated with chronic.hives. They cover me daily from head to toe and my quality of life is suffering. It has lasted 10 weeks now and I am desperate. The referring Rheumatologist (from Immunologist) denied me because I was “inappropriate”. What does that mean? I cannot find anyone that cares about me. I went to this site for support and maybe some answers. I am sure that you all are th real expets. Thanks.

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Katie how about we try email as i have written you an answer 3 times and each time lost it in cyberspace by doing nothing that i KNOW of. I am not a computer guru. I have lots of responses but on email we can share more personal info which will get us together. i am from Ky. Owensboro, Louisville. and Westerrn KY… Charlottern08 @ gmail dot______.I’m posting before this thing goes into spontaneous combustion!

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@katie

This is my first posting and I am not sure that I am doing it correctly. I have recently been diagnosised with an autoimmune disease based on labwork and generalized hives. The hives are miserable and I am on multiple antihistimines. I have not read about any autoimmune diesae that is associated with chronic.hives. They cover me daily from head to toe and my quality of life is suffering. It has lasted 10 weeks now and I am desperate. The referring Rheumatologist (from Immunologist) denied me because I was “inappropriate”. What does that mean? I cannot find anyone that cares about me. I went to this site for support and maybe some answers. I am sure that you all are th real expets. Thanks.

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Katie, you okay? Hoping you aren’t on as you feel better but kind of concerned that you are down. What I suggest is Vandy unless you have docs where you are that might recommend a derm and a rheu. in Louisville. I can give you names that are at Vandy that I will be using. Still fighting for the waiver from my HMO Medicare advantage plan. Oh I want to change but only advantage plans are affordable on the disability check!

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@swhitmire

You have been diagnosed with an illness that most docters are hesitant to diagnose because nobody has exactly the same symptoms, and because most docters dont have the experience and want to treat you by what they read in their books and not by your symptoms. Rashes are very common with lupus. Stay out of the sun! Make sure you take your medicine like you should, You need to read as much as you can on lupus/scleraderma. Good luck on finding a good docter, because they are hard to find! If you find one you better hang on to him! I live in georgia and we have no good rheumatologists around here. Through my 15 years of research on this illness, most of us(people with scleraderma/lupus) have gone through the same problems. I wish someone had told me this stuff when i was first sick, it would helped me alot…and i hope it will help you!

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Hi, I am new to this forum and have enjoyed reading all of your posts. My story is this, Hives for about six months on back side of my body, then rashes on my upper chest, eye lids, hands looked like poop, could not button or pull up my pants dx with photosenstivty, by a dermatologist, then got Raynauds then went to a rhuemy who dx me with Scleroderma, then four months said UCTD (mixed), reflulx,then sent me to a neurologist who now says I have neuromuscular involvment, ( Progressive muscle disease and neuropathy). I have autioammune hypothryoid. Autioammune microscopic colitis, hypertension, just to hit the high lights. LOL. you have to laugh right? Well I am on my way to a specialist and Northwestern in Chicago. for neurology. My neurologist wants a second opioion. She org, wanted me to go to Mayo but my ins wont pay.I have very bad balance problems, I walk like I am drunk. My legs are so weak, I can only do a little and then have to sit, for an A personality this is the hardest. If I do get a good day and do alot I pay for days later. I also get mouth sores, but have not been dx with schroegen (spelled wronG) sorry, but I am sure I have that tool I have had dry eyes for ever, the mouth, vagina area for a while. There was a time I lost all my hair off my legs, under my arms, on my arms, on vagaina area, this was weird, but now comming back. I feel that one of the hardest things about these dx is when they keep changing them on you. I was tested three years ago ANA postive speckled pattern and has tested postive since. I am so tired all the time and feels like I am dragging a hundred pound weight on both legs. Hard to explain to people. My neurolgist told me in June to quit my job, that was a shock, I had been pushing myself for so long, it became normal but she was worried that I needed to rest and take care of myself. So have been home since July of this year and this is weird too.
Do any of you have problems with colits? I have been in a flare for two months. I do not want to start on steriods but I may have too to get it untder control.
Well thanks everyone for listening to me, and I amso glad I found you all.
Susie

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@swhitmire

You have been diagnosed with an illness that most docters are hesitant to diagnose because nobody has exactly the same symptoms, and because most docters dont have the experience and want to treat you by what they read in their books and not by your symptoms. Rashes are very common with lupus. Stay out of the sun! Make sure you take your medicine like you should, You need to read as much as you can on lupus/scleraderma. Good luck on finding a good docter, because they are hard to find! If you find one you better hang on to him! I live in georgia and we have no good rheumatologists around here. Through my 15 years of research on this illness, most of us(people with scleraderma/lupus) have gone through the same problems. I wish someone had told me this stuff when i was first sick, it would helped me alot…and i hope it will help you!

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Wow… thank you to all for sharing this information. I am just starting down the road on dermatomyocitis. My 4 yr old has been recently diagnosed. We are currently seeing a rheumotologist and getting ready to start treatment. They are suggesting a EMG to be done next week to see how muscles are reacting. I am terrified, there seems not to be a whole lot out there this disease and we are getting so much thrown at us at once. It seems they really dont know a whole lot about the disease. I see that some of you test positive on the ANA test, my little guy did to… What does this mean? Thanks and good luck to each of you. I will be praying for all of you on this post.

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@swhitmire

You have been diagnosed with an illness that most docters are hesitant to diagnose because nobody has exactly the same symptoms, and because most docters dont have the experience and want to treat you by what they read in their books and not by your symptoms. Rashes are very common with lupus. Stay out of the sun! Make sure you take your medicine like you should, You need to read as much as you can on lupus/scleraderma. Good luck on finding a good docter, because they are hard to find! If you find one you better hang on to him! I live in georgia and we have no good rheumatologists around here. Through my 15 years of research on this illness, most of us(people with scleraderma/lupus) have gone through the same problems. I wish someone had told me this stuff when i was first sick, it would helped me alot…and i hope it will help you!

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It is tough to deal with for an adult, mom’s I can’t imagine when the “wolf.” as it is often referred to on the board. attacks your child. On the bright site they learn more and more about AI which may help your youngster. Dermatomyositis is my current issue and I have had rash on my arms, chest, and left leg. I am, so photosensitive Wal-mart has become my enemy with all the bright flourescent lights. I have to wear a hat and sunglasses in there. I paint my entire body with sunscreen before going anywhere. I don’t even trust cloudy days as my mother used to tell us “you can get a burn on a cloudy day.” Don’t worry about learning everything at once. If you have an Autoimmune Disease all the treatments and labs and tests end up being pretty much the same. My only suggestion is to add a really good dermatologist to you specialists. See what the rheumy thinks of that. I started with derm and see a rheum end of the month. OK testing the ANA is test one when an autoimmune disease is expected. Many people don’t test positive for months or years after symptoms start. I had an ANA 1:11280 when my Primary Care doc had me tested with the first rash. I know my muscles are being affected by the dermatomyositis but I keep doing some arm exercises. Don’t hold your little guy back, if he doesn’t feel like doing something he won’t. I still haven’t had an EMG, rheumy may want one. I like what my daughter always asks.”How will this test or procedure affect the treatment plan?” She is a nurse better one than I was! What we have is rare and frustrating but we can get better with treatment. Keep us posted.I have been fighting this since May10 when i had my first rash. Probably had flares with fatigue before but I thought it was other stuff. Good Luck and keep us posted. I bet you find another mom of a young child soon.

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I’ve struggled with this for 14 years… So many tests, so many wrong answers from doctors… Finally a clear diagnosis two years ago. (I always knew it was lupus, but rhummy wouldn’t diagnose because no rash on face-crazy!) and I couldn’t even begin to list the different meds I’ve taken…. But I do know the damage most of them have done to my body! For every pill the rhummy put me on, family dr had to give me two more to counter the side effects! I am now following an all natural plan which includes strict diet changes and zero impact workouts (in water) and herbs I grow at home that provide pain relief (legal ones…hahaha). I’m still struggling some days. I still have pain and stiffness each morning. But, I’m not sick from the meds, I’ve lost 50lbs and My head is clear! I’m also not as fatigued without all the drugs! Research natural alternatives… Then insist that your doctor help you through it. This is not a “vitamin-health drink” diet… Just eliminating those foods that hurt us and adding better foods to help! Goodluck!

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@livingngrace

I’ve struggled with this for 14 years… So many tests, so many wrong answers from doctors… Finally a clear diagnosis two years ago. (I always knew it was lupus, but rhummy wouldn’t diagnose because no rash on face-crazy!) and I couldn’t even begin to list the different meds I’ve taken…. But I do know the damage most of them have done to my body! For every pill the rhummy put me on, family dr had to give me two more to counter the side effects! I am now following an all natural plan which includes strict diet changes and zero impact workouts (in water) and herbs I grow at home that provide pain relief (legal ones…hahaha). I’m still struggling some days. I still have pain and stiffness each morning. But, I’m not sick from the meds, I’ve lost 50lbs and My head is clear! I’m also not as fatigued without all the drugs! Research natural alternatives… Then insist that your doctor help you through it. This is not a “vitamin-health drink” diet… Just eliminating those foods that hurt us and adding better foods to help! Goodluck!

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Wow, This is great news! I am curious about your diet. I know organic is best with any AI disease and I use cooling herb teas and foods but curious about your opinion of what hurts you. I see an acupuncturist and he is constantly fighting the heat in my body with needles and working to keep my energy level decent. He has been a big help but I have been taking methotrexate 25 mg just tapered to 20mg and will continue to taper. My derm is on board with the acupuncture my rheum. lets say he is not negative but I can read that he is skeptical by his lack of affirmation! My final diagnosis is dermatomyositis and probably caused by a benign tumor on my spinal cord that has been an issue for 10 yrs. All my docs are thrilled with how clear my skin is now they thought I would have much more scarring. When I look back at the medical photos I think, it’s a miracle. I do get fatigued easily and conserve energy as much as possible and believe in naps! I have only been dealing with this a year so feel blessed to be where I am. I am optimistic that it will never return and I’ll give God the credit. I have been through a really rough year loosing my dad March 23,11 then watching my down syndrome brother go downhill quickly and loosing him March 22, 12. I had to do all I could to breath and try to not stress out and therefore breakout! My Brother was more like my own child than a sibling. I practically moved in with my mom to care for him Nov. – March 22nd, what a privilege, sharing that time and caring for him.

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@swhitmire

You have been diagnosed with an illness that most docters are hesitant to diagnose because nobody has exactly the same symptoms, and because most docters dont have the experience and want to treat you by what they read in their books and not by your symptoms. Rashes are very common with lupus. Stay out of the sun! Make sure you take your medicine like you should, You need to read as much as you can on lupus/scleraderma. Good luck on finding a good docter, because they are hard to find! If you find one you better hang on to him! I live in georgia and we have no good rheumatologists around here. Through my 15 years of research on this illness, most of us(people with scleraderma/lupus) have gone through the same problems. I wish someone had told me this stuff when i was first sick, it would helped me alot…and i hope it will help you!

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Susie how did it go with the consult in Chicago? Are you on a treatment plan that is improving your situation?

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@livingngrace

I’ve struggled with this for 14 years… So many tests, so many wrong answers from doctors… Finally a clear diagnosis two years ago. (I always knew it was lupus, but rhummy wouldn’t diagnose because no rash on face-crazy!) and I couldn’t even begin to list the different meds I’ve taken…. But I do know the damage most of them have done to my body! For every pill the rhummy put me on, family dr had to give me two more to counter the side effects! I am now following an all natural plan which includes strict diet changes and zero impact workouts (in water) and herbs I grow at home that provide pain relief (legal ones…hahaha). I’m still struggling some days. I still have pain and stiffness each morning. But, I’m not sick from the meds, I’ve lost 50lbs and My head is clear! I’m also not as fatigued without all the drugs! Research natural alternatives… Then insist that your doctor help you through it. This is not a “vitamin-health drink” diet… Just eliminating those foods that hurt us and adding better foods to help! Goodluck!

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I eliminated all enriched flours from my diet (follow the Dr Oz recommended first five ingredient list) I eat only 100% whole grains now. It is rough to find the things I love to meet the requirements and I have taken to baking many things from scratch. For me… Sugars and those “white” or “enriched” foods caused inflamation! I am still struggling with my rash… Mainly because it’s spring and im a gardener! Love being outside! But, I do most of the shade gardens while my husband handles the veggies in the sun. I have found that ginger works for my pain. I add ginger root to my smoothies in the morning, my tea in the afternoon, and generally use it in cooking as much as possible. The most recent transformation I have made is to reduce the amount of animal protein I consume. I am getting most of my protein from soy, nuts, veggies, and fish. My body seems to be able to break it down and use it faster and better so I have more energy (or so my research tells me). Whatever the reason, I feel stronger! In general, I stay away from processed foods and opt for fresh and raw whenever I can… I make my own dressings, baked goods, and grow my own herbs… My main symptom is inflamation of my joints. I researched foods that cause inflamation and cut them… Then found that many food reduce inflamation, such as cherries and omega-3 rich foods. Broccoli is my favorite friend. Oh! And. Cow’s milk was another thing that I replaced. I drink soy, almond, or coconut milk now… The cow’s milk is an animal protein…. As for the rash… Water, water, and much more water… And reduce sun exposure and stress! The more I excersise (yoga and water classes) and eat right, the better my rash is (if I stay out of the sun)… Goodluck and let me know what you find that works!

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@swhitmire

You have been diagnosed with an illness that most docters are hesitant to diagnose because nobody has exactly the same symptoms, and because most docters dont have the experience and want to treat you by what they read in their books and not by your symptoms. Rashes are very common with lupus. Stay out of the sun! Make sure you take your medicine like you should, You need to read as much as you can on lupus/scleraderma. Good luck on finding a good docter, because they are hard to find! If you find one you better hang on to him! I live in georgia and we have no good rheumatologists around here. Through my 15 years of research on this illness, most of us(people with scleraderma/lupus) have gone through the same problems. I wish someone had told me this stuff when i was first sick, it would helped me alot…and i hope it will help you!

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I have sjogren’s syndrome, raynauds syndrome, photosensitive, depression and anxiety. sjt2925@gmail.com

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@swhitmire

You have been diagnosed with an illness that most docters are hesitant to diagnose because nobody has exactly the same symptoms, and because most docters dont have the experience and want to treat you by what they read in their books and not by your symptoms. Rashes are very common with lupus. Stay out of the sun! Make sure you take your medicine like you should, You need to read as much as you can on lupus/scleraderma. Good luck on finding a good docter, because they are hard to find! If you find one you better hang on to him! I live in georgia and we have no good rheumatologists around here. Through my 15 years of research on this illness, most of us(people with scleraderma/lupus) have gone through the same problems. I wish someone had told me this stuff when i was first sick, it would helped me alot…and i hope it will help you!

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Well anyone with the 1st 3 diagnosis’ will certainly end up with depression and anxiety!! I hope you are getting good treatment with your diagnosis. I am doing well, if it weren’t for intolerance for heat and fatigue I would feel great. I think the acupuncture helps me and I’m sure the methotrexate, which I am in the process of tapering off of, is helpful. I am trying hard to eat fresh veggies that are friendly to reduce inflammation. Diet is important. I have stayed away from chemicals as much as possible including no hair color until a month ago. I called my derm and told her I was depressed and was pretty sure it was related to my hair being grey! She ordered me to go see my hair stylist daughter and when she finished I cried i looked so much more like me!! I may be 62 but see no reason to look it!

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