Waiting on tests results

HEllo all I am new to this onling community. I find these groups very helpful and informative as I come across them doing research on the internet about LUPUS and MCTD. I started having chest pain around Veterans Day week last year (2013). And the pain quickly progressed to side pains, back pains, breast pains, numb feelings in my legs, hands and face, I felt like a different person and like I had the flu that wouldn't go away. I was beyond just tired or fatigued I was larthargic. But I wouldn't allow myself to sleep because I was terrified I wouldn't wake up. My primary care phycisian (after numerous visits and ER visits) finally said I was suffering from severe anxiety disorder and depression with fibromyalgia and referred me to a psychiatrist. When I would ask if it could possible be RA, MS, lupus or something like that he would always say no you're too young and you're not presenting with any of those symptoms. Needless to say he became very frustrated with me because I wouldn't accept anxiety as a diagnosis. Though I did start having panic attacks because I was terrified as to what was going on with my health and body. I basically had to demand to see a gastro doctor because of weight loss, appetite changes, and severe constipation. Which led to me seeing a nephroligist due to my creatinine being elevated and he decided to test for lupus. His blood work came back and he said I was positive for MCTD (Mixed Connective Tissue Disease) which I had never heard of. He referred me to a rheumatalogist and its been almost 2 weeks since I saw her and she said she thinks I have a mild case of lupus and she had her own blood work drawn. I was told it takes 2 weeks to come back and 7 March 2014 will be 2 weeks. I am praying that I am negative for any autoimmune disease. I have been feeling a great deal better since November when all of this started but I still have aches and pains and some days where I feel like I have the flu and just extremely achy. I would appreciate any knowledge on mild lupus and the difference between other types of lupus as far as treatment and progression etc. Thanks so much.

2 Replies

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  • Welcome to LUpus Patients Understanding & Support (LUPUS)@HealthUnlocked!

    I am very sorry to have read your story and the impact this has had on you. Unfortunately, your story is not uncommon as many women have been told "it's all in the mind" and diagnosed with anxiety, depression and FM. Unfortunately too, not all rheumatologists are expert in lupus and many have never seen or treated lupus. To be told you are too young is extraordinary since women have symptoms of lupus during their child-bearing years. Children and adults can also have lupus.

    Mixed Connected Tissue Disease is a confusing name. MCTD is in fact, a lupus variant condition and to all intents and purposes should be treated as lupus. What this means is that you have features of lupus and other autoimmune conditions such as rheumatoid arthritis and/or dermato/polymyositis. You need to be seen by a lupus specialist.

    It is not uncommon to have anxiety and depression. This can be the result of lupus itself; and/or an ordinary human response or reaction to have a disease that is painful and unpredictable. Thus, having psychological support is necessary, if not essential so that you do not feel alone, isolated or not believed.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    Be well!

    Ros

  • Thanks so much for your response and kind words of encouragement lupu-support1. Yesterday I actually received the results and was told I was positive for lupus. My follow up appointment with the rheumatalogist is on the 21st of March. I will join the other group I appreciate it. And I am starting counseling on the 13 of March so hopefully it will help with some of these feelings going on with me.

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