PDA

View Full Version : Newbie-'Test "Indicative" of Lupus'



nikita33
08-21-2008, 11:54 PM
Hi
Im nikita, im 34 and married, no kids and actually in college again.
Im not sure if this is where you explain everything, so ill try to keep it "short." i was diagnosed with hashimotos in Nov 06 and beginning in may 07, i started feeling horrible. all the usual suspects, pain all over everyday with no discernible cause, pins and needles, low fever, dry mouth, just a feeling of impending death. all tests, RF, ANA, lupus anticoagulant (?) were negative. also had a brain mri to rule out ms and was negative. had these symptoms for 4 months and then most disappeared for another 4 months, just inexplicable wrist pain remained.

then in march 08, it was like i woke up and it all came back. i went back to the dr, more tests, all negative. then in april, i developed a non-itchy rash all over my body. everyone is clueless. i was referred to the dermatologist and they gave me the strong steroid cream and it did nothing. finally, in july, they biopsied the rash and the results came back "indicative of lupus." the actual doctor came in and said that it was good that it was not "definitive" of lupus. (at this point, id take a dx of something to know whats wrong with me already).

well, no, i have no diagnosis. i was referred to rheumatology but i have to wait for them to give me an appt. i have another biopsy sept 30, but i dont know what theyre looking for. they took more blood, this time SSA and SSB. i guess thats all. i feel pretty scared and alone, but i would like the answer to all of this and its clear that this disease isnt always easy to diagnose.

btw, i was reading in the thread on skin rash pics. i have no malar rash on my face, although i am pretty red in general. someone posted a pic of something "mottled?" my rash is raised and red and fades to a brownish dry/scab thing, but all the skin underneath looks like that "mottled" pic. i was referring to it as pink and white tie dye. sorry so long, but i didnt know how else to get it out. thanks for listening.

Pearl
08-23-2008, 04:48 PM
Hello Nikita and welcome -

I am sorry to hear of your suffering. If you keep reading in the forum, you will find a consistent theme regarding diagnosis...it can take years for the beast to rear its ugly head in such as way as to be called by its name. I say that not to frustrate you, but to ease your mind, if I can. While it is frightening to go through what you are going through, and frustrating beyond belief, it is not uncommon. You are smart to try to educate yourself. Don't let the information about lupus frighten you. Knowledge is power. Truly. It may be helpful to start a journal of your symptoms...be as specific as you can as to their duration, etc. When you have your rheumy appt., take the journal with you. It will help you communicate with the doc in an organized fashion. Sometimes, we have so much going on (in terms of symptoms) that it becomes overwhelming to communicate. The journal will help.

Best of luck to you. I hope you are feeling better soon.

Jana

sits_inthe_corner
08-23-2008, 05:58 PM
Hi nikita33

Welcome to the board. I'm not diagnosed yet. I've had one possitive ANA test ... another boarderline ANA and a negative. I've had a possitive test on malar rash.

Blood work doesn't always tell the whole story.

My mother had lupus and my sister has it. I've had signs since I was 19 (and that was quite a few yrs ago) and still no diagnosis.

BUT I have found ways to cope and medications that help. You will too.

Hope you are feeling better soon. I'm looking forward to reading your posts

KathyW1958
08-24-2008, 08:01 AM
Hi Nikita,
Welcome to the site. Lupus is really hard to diagnose, because it can mimick a host of other illnesses and a lot of doctors do not like to diagnose Lupus for whatever reason. I know I had to wait literally 30 years before I finally got the doctors to listen to me and run tests for it. When I was diagnosed, the Rhuematologist told me that I had to most classic case of Lupus that he had seen in years. I will never understand why the doctors don't listen to their patients, I hope though that they are getting better in this aspect. I have two sister with Lupus besides myself and I had an Aunt pass from it. I hope that you can get some definitive answers and soon.

Hugs,
Kathy

Saysusie
08-24-2008, 08:37 AM
Hi Nikita and welcome :lol:
You've already been welcomed by some of our members who have also explained why Lupus is so difficult to diagnose and why the diagnostic process can sometimes take up to a year before a definitive diagnosis is made.
Often, while still in the diagnostic process, if doctors think that your symptoms are "indicative" of Lupus, they will still begin treatment of your symptoms with the "standard" lupus medications; Plaquenil, Prednisone and a form of NSAIDs (non-steroidal anti-inflammatory drugs).
The Plaquenil usually helps those symptoms of rashes, mouth & nose ulcers, and sometiems, fatigue. However, Plaquenil can take up to six months before you really see the benefits of the drug. Due to this, doctors will often also prescribe Prednisone (a corticosteroid) which also acts as an immunosuppressant (Lupus is a disease whose immune system is over-active and Prednisone suppresses this over-active immune system). Then, doctors will prescribe one of many different types of NSAIDs for pain.
When you next meet with your doctor, he may discuss some of these treatment options with you. At that time, you will have a basic understanding of what they are and what they are used for, with reference to Lupus. If he does not, then you should bring up the subject of him prescribing treatment for your symptoms while you are awaiting a definite diagnosis.
Pearl mentioned that knowledge is power...she is absolutely correct. I also suggest that, in addition to learning all that you can about Lupus, you become pro-active in you health care. That means that you might have to become aggressive with your doctors and insist that they listen to you, that they believe you, and that they treat your symptoms.
In the meantime, everyone here is more than happy to help you in any way that we can. You are very welcome here and I want you to know that you are not alone!

Peace and Blessings
Saysusie