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Old 09-14-2011, 06:23 PM   #1
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Help! Feeling confused!

Hi, I am new to the boards here and really need some clarification, maybe someone can help? I am 34 years old, I was diagnosed with Crohn's disease in September of 07, I have been remission for a year. Over this past winter I have notices some very stange symptoms that started with extreme fatigue, fevers, sever joint pain, facial flushing, mouth ulcers, blurry vision and muscle weakness. My PCP ran all kinds of tests. One was an ANA which came back positive. He referred me to a rheum/immunologist. I saw her for the first time 2 weeks ago and she ordered tons of bloodwork. I went to see her today and get the results. She told me my ANA was negative which is odd because I had two postive ANA's. One from my PCP and one from my Gastro. My SED rate was 91 which was extremely high the normal being less than 40. But the CRP was also negative so all she could tell me was that I have something going on but she couldn't diagnose me. I asked her about the facial flushing ( which she saw , it was very visible today) she claimed it was rosacea. I know it is NOT rosacea. It is only across the bridge of my nose, there are no bumps or any sign of it anywhere else on my body, my adoptive father has rosacea and this looks NOTHING like it. ALso it comes and goes and I can actually feel it when it comes on. Any advice out there? I truly feel like this could be Lupus, even though the ANA and CRP were negative. Anyone have any thoughts on this?

 
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Old 09-15-2011, 03:29 AM   #2
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Re: Help! Feeling confused!

Hi Stacey..I am so sorry you are not feeling well.I know it is very discouraging when a diagnosis cant be made.Several years ago I was started having similar syptoms as you..I also has a ton of tests done..Nothing clearcut was ever told to me.I had high ANA results from a few tests,then nothing on a few other.I think high ANA can mean systemic Lupus.I have rashes,I get them when I have a flare..Debilitatig joint pain,fatigue,palpiataions,stomache issues,mouth and nasal ulcers,fevers,,muscle pain,insomnia,anxiety.I was never officially diagnosed by a physican as having lupus,so I diangnosed MYSELF!I was told by several different doctors I had some sort of autoimmune disease,but they couldnt pinpoint which one...(????) Really??There are sooooo many tests readily available for all kinds of illnesses,,but I couldnt be diagnosed.I was diagnosed though with fibromylagia.but to my knowledge,that wouldnt cause high or elevated ANA titers.Sometimes there are no clear tests for the autoimmune diseases.They can mimic each other so much.Sometimes people ahve overlapping symptoms..I wonder why they dimissed a Lupus diagnosis for you so quickly(???)It sounds alot like that is what you have...I hope you feel better and please know that you are NOT alone..Some of these illnesses never quite give positive results.But just the same,it doesnt mean you arent suffering from them.It is so frustrating.I just dont know why they dismissed you when you had a positive ANA..

 
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