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It's frustrating. I have been sick and have shown symptoms of autoimmune disease for 17 years at least. And I have really had some real D... H... doctors along the way.

It took my current Rheum. who is affiliated with a well-known teaching school to really listen and test and retest and listen.

What tipped him off was the arthritis (I have always been told it is all finromyalgia, which some of it is). But the inflammation is another story. I have problems with my hands, wrist, jaw, neck, back, hips and knees. My inflammatory tests are usually elevated (and have been for years). I usually have a false-positive lyme titre (indicative of autoimmune) and recently an ANA 1:160 (that is new). I was diagnosed with Connective tissue disease and FMS.

About a week ago, I had my follow-up and it so happened I was in a terrible flare. My elbow swelled up with arthritis, I was running a temp. of 101 and my other joints were flared-up. I was extremely fatigued and not myself. He asked about my 'rash' which I have reported from time to time and he noticed active lupus rash on my neck and chest. He has now said that it is lupus and is treating me with Methotrexate in addition to plaquenil and prednisone and Bextra. I will need to d/c the prednisone at some point.

In answer to you caden/logan_mom, it took me along time and alot of illness to get diagnosed. However, it took years for me to get this sick. Regardless, a good Rheum. who can look outside of the box is your best bet for getting a diagnosis if your like me and the picture is not 'classic lupus' (if such a thing exists). Detailed records and concise notes are also a must as VeeJ suggests.

Best of luck and I hope you find your answer soon.

Mere --
Hi Shawnee,

Like Vee it took years for me too. Thinking back I have had a symptom here and a symptom there for over 20 years and I think you know the rash on the arms and neck first showed up 28 years ago. It has been almost 5 years since I began having pain, swelling, and heat in my joints, especially the lower ones. I have been seeing a chiropractor for back, neck, and shoulder pain for over a year now and every time he does a thermal scan I have red hot spots. They are in the same places, just varying degrees of inflamation.

You are younger than I but you may remember when those thermal strips were on the market to check fevers in young children without having to deal with a thermometer. You would lay them on the forehead or the back of the neck and the heat sensitive part would turn colors as it got warm until the correct temp was reached. I still have some of those and you should see what happens when I put them on my hot knees sometimes. One time during the flare that just ended, the strip revealed 107% on my right knee and 105% on my left. My neighbor didn't even have to touch them to feel the heat radiating as her hand got closer to them. :eek:

It is horrible that it takes so long to get a dx. It is even worse when the Dr.s tell you there is nothing wrong and make you feel as if you are crazy. In my case, like Lovemythreeguys, I also have Hashi's so that confused the issue too. Of course, it didn't help that I was seeing Dr.s who dismissed me as being a menopausal hypochondriac. I've fussed enough about that though and there is nothing that can be done about it. Unfotunately, the nature of this disease is such that we will never know if things would have been different if I had been dxed earlier. I just have to believe that it happened the way it was suppose to and be grateful it is not really bad. All in all I have it very mild right now and I am truly hoping it does not progress for a long, long time, if at all.

Hang in there Shawnee. I know it's hard to belive right now, but all things really do happen for a reason, whether we understand it or not. Do your best and give God the rest. More than that we can't do. Remember above all things, God Loves You and So Do We.

May God Bless You
Bonnie :wave:





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