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Mommyof1
03-20-2009, 11:20 AM
Hello all. Im sure you have seen me around posting about my symptoms and negative lab results lol. Back in september when I started this investigation into my symptoms I had a low positive ana come back. I also had a uti at the time and blood in my urine and was iron deficient and anemic. The IDA was treated and got better as was the uti. I just recently saw my neurologist to be evaluated to see if he could help solve the mystery as I have been seeing him since age 15 for seizures. Two blood work ups after that my anas were negative. I also felt I wasn't flaring those times either. My lab results came back negative except for the ana. I recieved the letter yesterday in the mail. My neuro also said I had raynauds because my pulses in my feet were good so it wasn't a circulation problem and I was tested for nerve problems which came back normal. My new primary dr tested me for porphyria. Its a rare genetic disease. It is not associated with inflammation or raynauds. Since raynauds is autoimmune itself I personally think that the anas mean something along with all my symptoms. My neuro even stated in the letter to take the result to my pcp because it could mean a rheumatologic condition. I just want to know other peoples opinions on this situation and what you think. I also see the rheumatologist I saw before in may. I was thinking about switching my appt sooner and getting evaluated again taking my list of symptoms and my blood workups showing the blood in the urine, pos anas etc. Can anybody give me any suggestions on some tests I could have ordered or anything that could help me know what to do next? I really believe Im finally getting somewhere and being in a flare am ready to be diagnosed so I can feel better! I hope you all are well and have a great weekend! -Brittanee

sick n tired
03-22-2009, 09:50 PM
Hey Brittanee,

Sometimes tha Ana test is all over the place...there are other criteria that they use to diagnose lupus. or instance, Raynaulds is one of them.

I am one who has some strange blood tests...I will have a few saying the liver is affected and then some saying that it is normal...so strange.

My doctor uses the anti ds DNA test and calls it his lupus marker...He only tested the ana once...now it is the other tests...

You do not have a doctor telling you that it must all be in your head because the bloodwork is normal...that is great...don't worry. It will come out in time..the hide and seek game that autoimmune plays, in time ends.

Blessings,

Karen

Mommyof1
03-26-2009, 07:56 AM
Yes I believe you are right about that one. I had the 1/160 with a speckled pattern as the ana from my neurologist.. greater than 1/80 made it positive and my pcp got his ana back and it was 243 which was considered high. >120 made it positive. I feel horrible this week and my appt with the rheumatologist isn't until may 18th but I called yesterday and put myself on a cancelation list as well. What will they do if i'm not flaring when I get to the appt? I guess I'm just wondering what to expect since the last rheumy I saw months ago said I was fine and sent me on my way. Thanks and I hope you have a blessed day :) -Brit

sick n tired
03-26-2009, 09:37 AM
Hey Brittanie and Mommy of 1,

it is sooo much better to go when you are flaring. For a year, now, I have cancelled when I felt bad and gone when I was feeling more like it. Rheumy was beginning to think and even said that perhaps I didn't have lupus as he first thought...Early January of this year I got sick with bronchitis. Went to pcp and got meds. Started having other pains and ran out of Rheumy's meds. When hubby tried to refill the office called and when they heard the symptoms called me in. I cancelled one appt. the week before, but finally came in when I was feeling somewhat better...Turns out I had pericardial effusion as well as pneumonia and some other things I don't understand, yet....Rheumy is now thinking that indeed his initial dx was right. I know it is hard to get up and get there, but he needs to see the symptoms in action. You telling him is not enough, apparently. Sorry for the lectuture....:cute: