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Thread: New Member and Still confused

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    Default New Member and Still confused

    Hi,
    I am a new member. Over 12 years ago I began having extreme leg and arm burning, weakness and trim bling along with extreme fatigue. I had a hard time holding my arms up long enough to dry my hair. I would have to lower my arms several times before getting the job done. My husband would take me shopping, but I could not make one round in the mall. I would become out of breath and feel as if I could not make it back to the car. I also experienced for the first time, while on vacation at the beach, the feeling as if I were paralyzed and could not get up out of my lounge chair. I was on the beach alone at time, and I could not even say anything to ask for help. I finally gained the strength to get up, but I did not think I was going to get back to our camper. I once was an avid beach person and could take the sun and heat well. However, I know get heat exhaustion easily, and My cheeks, nose and forehead get extremely red. I do not have a severe rash, but their are signs. At that point, I saw multiple doctors and had test after test checking me for a muscle disease, thyroid, ect. They could not come up with a diagnosis. They began to discount it as depression only. I went for 11 more years having times of being better, but with much joint pain and continued weakness, never able to do the things I had always done and enjoyed. Going to work took everything out of me. Then in the past, 2 to 3 years, I began to have tingling, numbness, and cold fingers and toes, and pain in my neck,back and shoulders worsened, but what go me the most was I began cognitive issues that became so bad I had to give up my teaching job. I could not transition my thoughts, retrieve information, process information quickly enough to answer student's questions and my expressive and receptive language at such a great deficit that I experience embarrassment and avoid conversations.

    Recently,, a neurologist found a positive SSA and sent me to a rheumatologist. He has put me on Plaquinel (not spelled correct) and prednisone. However, he is ad admit that I have Sjoghren's syndrome, but has not committed to a Lupus diagnosis. I am still quite confused.

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    I really hope you find your diagnosis soon. It really sounds so much like lupus... I can relate so well to all the things you have been through!!!! I am also a teacher and have been off just since this September because of mainly the cognitive issues... however, the physical issues I have just pushed through and I cringe at the thoughts of going back to that. I felt so physically awful that I just had this feeling that the job was going to cause me to die early. I am thankful to not be working now but I will prob have a battle ahead of me for long term disability.

    hugs, heather
    We're here for a good time, not a long time!!!!!

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    Saysusie (12-18-2013)

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Default

    Hello and welcome to our family.
    I am sorry to hear that you've suffered so many years without a diagnosis and that you still have no definitive diagnosis. However, in the world of auto-immune/connective tissue diseases (such as Lupus), this is quite common. There are so many of us who have waited years for a diagnosis and yet many of us who still have no diagnosis and then a large group of us who are told that we have MCTD (mixed connective tissue disease) or UCTD (undifferentiated connective tissue disease).
    I will say that your symptoms certainly sound as if they could be an auto-immune disease. I am glad, however, that you doctor chose to treat your symptoms even though you do not have a diagnosis. That is very important and I do hope that you begin to feel some relief soon. Please be aware that you must avoid any sun exposure (UV/UVA/UVB) as it can (as you've seen) cause serious complications with your illness. Also, most malls are equipped with fluorescent lighting..this is something else that we must avoid at all costs. This may be why you felt so drained after being in the mall. It is imperative that you wear a sunscreen (minimum 50 SPF) that blocks both UV and UVA. You should wear it every day (I use it as my body lotion) along with protective clothing that covers all of your body. Do this even if you intend to be indoors at any place that could have fluorescent lighting (malls, restaurants, offices, doctor and/or dentist offices etc.). When going outside (winter, spring, summer, or fall) do the same thing and include sunglasses that block the rays as well as a hat.
    Please read through the "stickys" at the top of each forum here. They are filled with great information and you may find some suggestions on how to make appropriate lifestyle changes that will help you to manage your illness and/or avoid flare-ups. It is important that you find a way to make the changes so that you can find a "new normal" that allows you to have a somewhat normal life in spite of your illness.
    I wish you the very best and I am glad that you found us. We are here to help you as much as we can and in any way that we can.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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