... Hi Hatehashis!
I just wanted to say hey bc a lot of what you described sounds like what I went through/am going through. I wanted you to know you're not alone... as if that's comforting because unfortunately it means there are too many jerk doctors out there making patients feel this way!
In July I mentioned to my primary care dr that my joints always get achy. He sent me... (11 replies)
... I haven't posted in awhile. I went back to my Rheumotologist yesterday for a check up and he said my diagnosis is "UCTD with a Lupus overlay. ... (6 replies)
... Thanks for answering my many, many questions! I wonder how common it is to be diagnosed with APS first and lupus later. I suppose sometimes the conditions develop separately and you are diagnosed with either one first. ... (6 replies)
... I was dx'd with APLS first - back in 1996. In fact, when I was switching rheumies about 7 years later, I was shocked to read in my records the following: "highly suspicious of lupus" when I was never told this. I had symptoms which led to my diagnosis of APLS early on, such as ITP (Idiopathic thrombocytopenic purpura) and I was also having grand mal seizures (sign of sticky... (6 replies)
... If you don't mind me asking, were you diagnosed with antiphospholipid syndrome prior to your lupus diagnosis? ... (6 replies)
... I'll jump in here with the little knowledge that I have on this. I can only relate with what I have. Hope I can help you sort some of this out.
Like you, I started out with low positive anti DS-DNA (lupus marker). I didn't go on any meds at that time. It took a few years, but I went to a very high positive. By the way, I also have the nucleolar pattern.
I do have the... (6 replies)
... ld not recommend Plaquenill now. I'm concerned about the possible antiphospholipid syndrome. I have only been tested once for clotting antibodies. Negative on lupus anticoagulant tests. Have read that Plaquenill may help prevent clotting and sun sensitivity. I'm on 81 mg aspirin once a day now. ... (6 replies)
... Any insight would be great. I'm an unusual case, I guess. And I feel guilty that I am a probable lupus patient who feels great and has never had joint pain or other lupus symptoms like lack of energy. ... (11 replies)
... and I don't want to minimize or demean anyone else's experience. I merely wish to suggest that environmental triggers merit in cases of incomplete lupus. ... (2 replies)
... hour plane ride away isn't exactly convenient. My case isn't complicated at this point, so I'm hoping for the best. With my labs, and history I seem to have incomplete lupus or undifferentiated connective tissue disease. Possibly late onset lupus though it seems less likely. It may or may not progress to lupus. ... (7 replies)
... Many people with lupus do run low Vitamin D levels, but that is an association only. ... (76 replies)
... Then, in your shoes, I'd look for additional info on APS. You could try your local library, where you'd find books that cover lupus and its close cousins, including APS. ... (1 replies)
... I was finally diagnosed with Behcets after biopsies of my mouth and genital ulcers...I think the biopsy shows differences between lupus and BD. I've also had a negative blood marker test for Lupus, so it was ruled out. ... (3 replies)
... Thanks for the additional information. I think it is human nature to put a lot of trust into the medical professionals we interact with. Most patients probably err on the side of trusting the "expert". Of course, that isn't always the best approach. Hindsight is 20/20! It's wonderful you have such a great PCP now. My Aunt, who is in her 70's now, had more than one... (6 replies)
... Just to clarify...it was the bruising and severe joint pain that brought me to the rheumy in the first place, but he only focused on the apls. I lived through the flares for years, not knowing what they were. I was simply told that it was probably a "virus that hit all of my joints", which I found out was not the truth at all, after later reading my records. I foolishly... (6 replies)
... Does anyone know if a drop in C3/C4 serum complement levels, while still within "low normal" ranges can be a concern for SLE?
I've got "incomplete lupus" or UCTD for now but my rheumy is good about still taking labs and looking to see if I'm moving into a specified category. I'm on some hefty drugs because he calls my UCTD a "lupus-like" illness, so I'm on 20 mg of... (9 replies)
... Does your patient have lupus or fibromyalgia? ... (23 replies)
... r being diagnosed with diabees, I was sent a liver specialist. After eliminating cirrhosis of the liver, he ordered anti immune testing. The panel showed up for lupus antigens. For three years my forehead had been breaking out in what I thought was hives. I also had severe itching. ... (5 replies)
... Hello, I've been on this site alot these past few months since the words LUPUS and Autoimmune came into my life. ... (5 replies)
... equipped to run autoimmune labs properly. Same problem occurred with my local dermatologists, two of whom ordered skin biopsies that were deemed incomplete by my metro drs. ... (17 replies)