I've been a lurker for so long! Thanks to all of you for keeping it real in your posts and allowing members to come to a safe place for support and answers to questions not even our professionals will or can answer.
Autoimmunity is not new to me since a positive ANA showed up nearly 18 years ago. I have lost my hair to alopecia in varying episodes of severity (in nearly 20 years I have never been free of alopecia), was diagnosed with Hashimoto's, had numerous bouts with rashes and experienced months of not wanting to get out of bed because of bone numbing exhaustion. I also have periods of mouth sores, painful muscles, joints and brain fog. I am currently back at university doing a new degree and the brain fog isn't very welcome while I'm trying to study for exams and write papers. I have begun to have issues with clotting (hard to stop bleeding and 7 bleeds into my eyes since January). I am finding the older I get the longer it takes to recover from viruses and infections and they often send me into a "flare". An abscessed tooth at Christmas (2012) and two back to back viruses sent me into a flare I cannot seem to get past right now. I was told four years ago that I was in the early stages of Sjogren's. I also have collagenous colitis, however my gastroenterologist says this condition is not autoimmune related. I also have anti-parietal cell antibodies. In 2010 I had a speckled and homogenous ANA of 1:5120, however all ENA's were negative. Three years later ENA's are now positive.
My Rheum says I likely have UCD or MCTD. My current (May 2013) lab results are:
NSpl 1:5120 (dense fine speckles) (DFS)
NSpl includes p80 colin and SP 100
Sjogren's Syndrome A/Ro 60 Antigen : high positive
Ro 52 Antigen: high positive
RNP: high positive
Smith Antigen: low positive
Sci-70 (topoisomerase l): low positive
I also have chronic low white count (CBC)
I am wondering if anyone on the forum has similar lab results and what their Rheum says about a diagnosis? While I am willing to go back on medications to manage symptoms, I also don't want to medicate for something I may not have.
My heart goes out to everyone on this forum who comes here in search of answers for themselves or someone they love for these frustrating, mysterious and often capricious symptoms of autoimmunity. I identify with all of you who have for years gone in faith to our wonderful and well-meaning...but sometimes poorly trained...medical professionals for answers for why we feel so miserable and unwell. Then we come away feeling like we should be apologizing for taking up time and space in the waiting rooms because NOTHING visible or tangible is wrong! The miraculous human body is designed in such a way to let us know when something is amiss. Trust your intuition.
Thank you for any responses!
hi das, and welcome. it is always good to here when a "lurker" decides to "come in from the cold". on any given day there is about 160 guests on our site.
Hi Das an welcome. The one thing about AI diseases is that many of them are medicated the same way. As you have learned letting the disease go will destroy your body so I suggest giving the meds a try. Sometimes it takes some adjusting to find the right meds/dose for each person but that is much less dangerous than letting the disease continue to take its toll.
Welcome aboard. We are glad to have yoy
Hi Das and welcome to our family. I, too, am glad that you decided to join us. Tgal has given you some great advice about medications and I agree with her whole heartedly. Many AI/Connective Tissue diseases are treated with the same medications. The difference is finding a regimen that works for you and that alleviates the suffering from your particular symptoms.
With reference to your test results, I would surmise that many of us here have had very similar results. However, doctors are loathe to make a diagnosis absent some specific indicators. As such, many are diagnosed with MCTD or UCTD. Also, it is not at all uncommon for many of us to suffer from several overlapping diseases at the same time. So, you are in good company on that score also (lol).
Again, I am glad that you decided to join us. I wish you the very best!
Peace and Blessings