View Full Version : Can't Get Diagnosed

Divine Diva
04-25-2006, 06:07 AM
Hello, my name is Nessie. I am a 46 year old Africian American female who has been going through testing for Lupus. I am so tired of test but I can't seem to get a correct diagnosis. My doctor seems to feel that what I am experiencing is Lupus related, but none of the lab test are confirming it. My symptoms are a rash that is covering my neck, back and chest, a slight facial rash on my cheeks, severe muscle and joint pain, extreme fatigue, recurrent fevers of unknown orgin. I have had the ANA, ESR, TSH, Urinalysis, CBC, CRP, CMP. I even asked them to do an HIV to r/o everything. I just had the Anti-DNA, C3, C4 drawn yesterday but the results are not back. Some of the test were slightly abnormal but they said not enough to make the diagnosis. Now they are sending me to a Skin Specialist to have a biopsy of the rash. My question, I guess is was it this hard for any of you to get diagnosed. What else can I do and what should I expect. Thank you for this information. I want to know what is going on.

04-25-2006, 11:33 AM
Nessie, I am so sorry you are on that roller coaster. I think most of here can empathize with you on this one. For myself, it took me SEVEN years, lots of drs and tons of pokes and prods and I just got my dx in October of last year. The thing that finally did it for me was the biopsy of the rash. It came back positive for SLE and I've been on meds since then. I see my rheumy next week and have a feeling we'll be adding more then as well. Have they given you anything for the rash to make it go away? If it works let me know cause when mine erupts nothing they've given me helps it. {{HUG}} Good luck and keep us updated.

Divine Diva
04-25-2006, 12:24 PM
Thank you for the response. I am actually being scheduled with a skin doctor to have a biopsy of the rash done. I can't stay on this roller coaster much longer. I have no energy, all i want to do is sleep, my body aches, the rash won't go away, i really don't have an appetite and i have constant nausea. So hopefully, the biopsy will do it. I am using Steriod cream and I can't tell a difference yet, but i've only been using it a few days. I'll let you know. Thanks again.

04-25-2006, 01:27 PM
You are in the most difficult spot right now. It's very hard to be feeling so sick and not know for sure why. It took six years for me to be diagnosed properly. I went through a couple of misdiagnoses and a long time of doctors telling me there was nothing wrong with me.
I also had constant nausea for months at a time. I would drink ginger tea. That seemed to help. Even after I started meds it took months for the nausea to subside. The good news is that the meds have helped and I only have intermittent bouts of nausea now. I make sure to schedule my meds around my meals, taking them with food helps also. I sip on water all day. If I drink too much at once it will induce nausea so I deliberately drink small amounts at a time to stay hydrated.
Anyway, so many of us have been through what you are experiencing now and we all feel for you. Hang in there, it will get better. A diagnosis doesn't necessarily change much but it sure makes you feel a little better mentally. For some reason putting a name on your challenge makes it easier to handle.

Divine Diva
04-25-2006, 02:50 PM
You have made me feel a little better knowing that I am not the only one this has happened to. Is severe sweating a symptom of this? I have recently just started breaking out in sweats for no apparent reason. I am on a HRT, and have been for years, so I know it's not hot flashes. I just sweat badly. Thanks again for the insight. I have read others post on different topics and find this site to be very informative. God Bless You.