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charbaby (@charbaby)

mixed connective tissue disease

Bones, Joints & Muscles | Last Active: Dec 31, 2021 | Replies (31)

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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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Replies to "This is my first posting and I am not sure that I am doing it correctly...."

Katie, sorry you are having so much trouble. I too am fairly recent diagnosis and I started with an itchy rash on my chest from sun exposure for 20 min! That was in May and I am still getting referred around to find the right treatment. My labs show 3 different autoimmune diseases dermatomyositis, scleraderma, and lupus. I still haven’t had a rash on my face. I have a rash on my arms and my left leg. I don’t know what you have been told I assume you know “NO SUN” sunscreen is the rule. Do you feel extremely fatigued? Which disease showed up in your lab work screeening that made them diagnose you with AI? I started with my primary care and he referred me to a dermatologist, I also saw a rheumatologist and knew I wouldn’t see him again. Attitude is everything! His was indifferent! I asked for a referral to another and still haven’t seen him. My derm put me on methotrexate which is a form of chemo that suppresses the overactive immune system we are dealing with. She chose this because I can’t take anti malarials and at 61 and having already had hip and arm fractures prednisone was not a good idea. My rash is better on the metho but my skin is still real sensitive- long sleeves make me miserable. Have you had any steroids yet.? Do you have good insurance? Are you in a large city where there is medical school? I will be seeing a derm at Vanderbilt as my derm feels I need more help than she can offer. Now that’s a lot of questions but it will help us know details of where you are medically. I know one thing you need to see a different rheumatologist and definately need a dermatologisit. You will be in my prayers. What is your age?

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.

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!

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!

Any side effects of the methotrexate yet?

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