Discussions By Condition: I cannot get a diagnosis.

Dermatomyositis & Lupus like SXS. Negative ANA

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • January 24, 2010
  • 06:54 PM

This may be a little long but thank you for reading. I have a few things that have been going on for years, but I'll start with the most recent first. For the past few months, I've been experiencing total back pain, usually with standing and laying down, and a patch on the left side of my back under the shoulder blade that is numb/tingling. It feels like a constant electric current and sometimes it gets a burning type sensation. If I'm sitting, I only feel it slightly. Standing is when it's at its worse. The top of back and shoulders/neck feel very sore like I worked out too hard. I also get a shooting/shock type pain when turning my neck sometimes. My arms feel a little weak and sometimes the muscles are sore as well. I have to take breaks while brushing my hair or brushing my teeth. I also get little shock sensations too in my fingers and wrist when making certain movements. Everything tingles, not constantly, but everything has its share at one point during the day. I also get twitches in my fingers, stomach, thighs, eye, and feet. Two months ago I developed what looks like a rash across my knuckles, elbows, and knees. It isn't raised or itch. It's faded now but still clearly visible. Heat such as from the shower will make it all come out again and then my hands and knees become very stiff. The "rash" on my knees is purple rather than red like my hands and my eyelids also have this brown hue up to my eyebrows. My fingertips are also red, and bright red around my cuticles, but no infection. I haven't been sleeping much though, so the eyelid discoloration could be from that. I've been having problems with my knees for years now, undiagnosed, but it's become much worse with all of this now. Sometimes I wake up with severe joint stiffness....other times I don't. And sometimes it happens randomly during the day. I constantly feel like someone beat the crap out of me and I could sleep for days. Rest, heat, cold, etc doesn't make a difference. I had bloodwork ran two days after the rash appeared, my ANA was negative, Vitamin D put me at deficient (14), and Chloride was slightly high (111). My Calcium and Sodium were both perfect though, including thyroid and everything else. My B12 was within normal range but I've been been getting monthly B12 shots anyway. It hasn't helped in the slightest. I started taking 50,000 of vitamin D weekly and that didn't help either so they had me take it everyday, for 5 days. No difference either. I'm waiting for my bloodwork to come back now on some tests from the other day but I'm not optimistic about them because my ANA was negative. I know it's always a possibility to test positive on some of these with a negative ANA, but I really don't think I'm going to be one of those people. I'm sure there's much more I'm leaving out but those are the main issues right now. Can someone please help me? I'm starting to get really scared and I have a young child to take care of.

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3 Replies:

  • HI -- DO TAKE a look at--------------- polymyositis---------- ----polymyositis---IS-------the pain ---------------Dermatomyositis the rash. even if your- ANA was negative with this test. wait till you feel at your worst . "THE DAY WHEN IT feelS like someone beat the crap out of YOU""" only then do you go TO THE DOCTOR and ask for a ana test .and you wil be shocked to see the diffrence in the reading.OF THE TEST. TAKE A LOOK AT http://www.medicinenet.com/polymyositis/discussion-227.htm AND SEE IF ANY IS THE SAME AS YOU
    charmaine petzer 176 Replies
    • January 25, 2010
    • 02:20 PM
    • 0
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  • Have you been to a good Neurologist?
    Anonymous 42,789 Replies
    • January 26, 2010
    • 09:37 AM
    • 0
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  • No, I haven't been to a Neurologist. I just when and seen a Rheumatologist for the first time last week and he's who I'm waiting to get my bloodwork from right now. I don't think the things hes testing me for are indicators of Dermatomyositis though. This is what I'm being tested for:Sed RateLupus Anti-CoagulantCPKRA FactorAnti-SSAAnti-SSBAnti-Thyroid PeroxidaseAnti-CCPHLA-B27CRPThe way I'm feeling and the way my rash looks, I don't see how it could be anything else. I've looked at pictures of other autoimmune type skin issues and none of them look like this at all. But then again, I'm no expert. I also forgot to mention I had x-rays done of my ribs and back, and according to them the only thing that showed up odd was my spine has a 9 degree curve, which is complete news to me. So I don't know if it's always been like that or a result of whatever is going on with me. However, I do know that 9 degrees is pretty much nothing and should not be causing any of my problems at all. Anything I've researched where people were experiencing the same chest pain, back pain, etc as a result from Scoliosis, had it in severe forms at least 20 degrees and above. Thank you both for responding.
    Anonymous 42,789 Replies
    • January 26, 2010
    • 06:48 PM
    • 0
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