I posted earlier as "the lurker" and I thank everyone for your responses. I had another checkup with my neuro yesterday and they have basically cleared me of MS and cancelled the LP exam that was scheduled for next Friday.
I have an appt with my internist in about 45 minutes and I am going VERY prepared with journals, photographs of my skin rashes, lists of my symptoms of the last 3 months and also had my neuro forward my chart to his office yesterday from their work up.
Last night I began feeling really bad, running a low grade fever, slightly tender abdomen and have become urinary incontinent this week. The incontinent thing is REALLY new for me. UTI? I'll get him to check my urine for anything and everything today but who knows.
Also I am scheduled with my GYN for a colposcopy and poss biopsy today as my paps have come back with changes again. Seems like when it rains it pours!
Please everyone keep a thought and prayer in the back of your mind for me today. My symptoms are very lupus like and we are beginning the testing process today to confirm or deny this.
Thank you again for your thoughts, answers and support as I continue on my medical mystery for a diagnosis.
Dear armslee (Wen), About that urinary incontinence, I had a lot of that in the years right before getting the Dx of SCLE. Excluding the times I had stones, my urologist did not find any apparent cause or infection. He actually toyed with doing that knock-out test for Interstitial Cystitis. But because I had so many other things also off (headaches, fevers, fatigue, rashes, anemia, tingling sensations, IBS-like problems, etc.), he decided to hold off on the IC test... which was lucky, holding off, that is, as I switched to a teaching hospital rheumie & got the answer within a month (SCLE).
I'd have never guessed so many varied & changing symptoms, on so many fronts, would turn out to be lupus. But that's what the literature calls it: "a disease with protean clinical manifestations".
I really hope your GYN appt. today goes well & that you next can do that BIG PUSH, to either tweak all your issues apart, or to get them all to mesh into one "single bullet theory". The phrase in quotes was voiced by one of my local specialists, and, oh, how it turned out to fit. Finally.
I hope you keep us posted, when you're up to it, OK? Thinking of you, Vee GOOD LUCK!
Thanks for the reply. Well this morning's appt went well. My internist I could swear is borderline OC so in his field that is probably a good thing! Here is a breakdown of the bloodwork he did:
B-12, Ferritin, Potassium, ANA, Lipid Panel, Sed Rate (ESR), Urinalysis (with culture) and Rheumatoid Factor.
He said this is our "starting point".
Regarding the incontinence, we are a bit troubled by this as my urinalysis is the only thing with immediate results and they were normal. He gave me 2 days of antibiotics and asked me to call tomorrow for the culture results. The rest of my labs won't be available until next week.
I tried to pin him down about "possible" diagnosis and well, doctors are funny about that sort of thing!!! He wouldn't say anything, just that he wanted my results before proceeding. I am to continue on with current therapy for joint pain NSAIDs and Percocet as need for pain. I point blank asked him about lupus, he didn't answer me, but all his labs gave me my answer that he suspected it as well
So, I feel a bit better at least knowing the ball is rolling!!!!
Heading off to the GYN for the colposcopy in about 50 minutes and sooooooo not looking forward to that!
THanks again for your comment on your personal experience with incontinence. I have had mental anguish with this. I didn't even experience that with pregnancy and have had to resort to constant use of pantyliners.
I will keep everyone posted!!!
Armslee, I think my first tests were the "basics" plus the ANA. This wasnt a good approach for me, as I stayed ANA-negative right to the bitter end. This happens with anti-Ro people about 30% or so of the time. Just for what that's worth... We'll watch for your updates. Best wishes, Vee