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Well here's my latest as of today:

First of all, I took my boys to the park and played in the sun for a good hour this morning --->sprouted a malar rash, faint but visible :rolleyes: ---> induced joint swelling and redness :nono: ---> also got two new mouth sores today :D ---> hours later also had a resurrection of my axillary lymph node tenderness which had almost gone a couple of days ago :eek: .

Lo and behold, this is good news although I am seriously going to pay tomorrow as I'm also working tonight and not getting any sleep so I'm going to hurt, hurt, hurt. Anyway, the reason it is good news is because I had some real live evidence to take with me to my follow up rheumatologist appt. today. I also took a picture of my rash when it is "angry". Well he asked what happened when I went off prednisone and I told him about my mucosal sore outbreak, swollen lymph nodes, pain and muscle tenderness, joint swelling, the works. Oh guess what else, I get these bumps on the outsides of my ears along the cartlage which I found a picture of on a dermatology website under lupus rashes, lesions, etc... I have this and have passed it off as just a weird thing all this time, I told him about this too. He saw my mouth sores, rash, swollen joints, etc... Most important I really feel like he believes my symptoms now, not that he didn't "believe" them before but he seemed more convinced that something was definetely going on this visit, it was comforting. :angel:

He asked when my appt w/ my real rheumatologist was (Oct. 26), also asked if I'd been taking anything and I told him I went off everything since my last visit unless I was in severe pain, then I'd use Ibruprophen but usually Darvocet as needed when it was really bad. He said he saw no problem with me using the Ibruprophen again 800 mg TID for now to help with the pain and joint swelling. He asked if I felt like I was where I was before I went on the Prednisone, I said, "yes, except my fatigue isn't as bad as it was before and my chest pain is not severe and I haven't had shortness of breath."

He said that at this point he thinks we need to get as much info as we can together but not jump to conclusions yet. He said, "whether this is fibromyalgia or something lupus-like we don't know yet so we don't want to put you on medications and label you until we are absolutely sure." He recognized though that this is SOMETHING which I didn't get that impression before. I feel better just knowing he is listening now which I didn't feel like that the first time around. I truly think he's going to get tests done etc... and then let my other doc handle it which is fine by me, at least we're doing something while I'm feeling icky. He wants me to see a dermatologist and get my rash biopsied, the funny thing is that I asked him last time if I should get my rash biopsied and he asked me "why?" and looked at me like I was dumb or something. He also ordered another ANA, CBC, Comp Metabolic Panel, ESR, anti dsdna, I think that's all. He sent them through a different lab than before too to see if my ANA looks different, it was 1:160 homogenous before when I was feeling okay. I didn't see what he'd written but he had a typed up thing in my chart that was big, big, big so it will be fun to get a copy and see what he wrote. :p

Anyway, moving forward a little at a time just took a big step today even though the whole trip, time in the sun, etc.. just pooped me out. You know what though??? I had so much fun playing outside with my kids and not worrying about how I would feel afterwards because I knew I needed the sun to do it's thing it does to me so my doc could see I am really not making this up. I'll keep you posted about the labwork. I hate to say it but if this IS lupus, in a way I sure do I hope my antidsdna is positive just to make the diagnosis part easier so I can get some medication and feel better again, but I guess I should really watch for what I wish for :nono: . Sorry I'm having way too much fun with the little smiley people tonight. Sorry this is an epistle.
Love you all,
Shawnee





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