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Mommyof1
05-30-2009, 08:16 PM
Ok...I heard back from my dr and my ana was negative this time! Everything was normal except my CPK. Apparently it was elevated back in march as well but no one ever told me. A normal reading is between 50-100 and mine was 277 back in march and 352 this time with the tests done at hopkins. My dr wants to do more specialized antibody testing when I go back in june to check other parts of the cells since the ana only tests the cell nucleus. I also am getting treated either way when I go back but what these tests show will determine what type of treatment we will start. She said she can only say it is a pain syndrome at the moment because we dont have enough proof of whether it is even autoimmune or not. I will not just be treated with a narcotic which I am glad of. She said some people come to her like me with symptoms and non-specific tests and go on to develop lupus or something like it and some dont. So its watching and waiting some more :/ I am not really thrilled about this but what can i do? lol I just hope we can get something figured out soon. If anyone has been through this or has any comments etc please let me know! Oh and my muscle strength is fine so were not even sure if the CPK is signifying actual muscle damage or not. Hope everyone is well. *Hugs* -Brittanee

Pearl
05-31-2009, 08:15 AM
Oh, the diagnosis process can be so frustrating. Hang in there and take care of yourself.

Jana

KATROACH1972
05-31-2009, 02:29 PM
Sorry, I have had negative anas constantly, but my crp, sed rates, rhuem factor, and platelets stay high. I am being treated for seronegative LUPUS last 2 and half years. I have atleast 6 relatives that either have Lupus, or ms. So, it runs in my family, wether the certain tests say what they think it should or not. Dont give up. My sister was told she was positive, and years later negative, so its posible, it can say negative even with it. Also I read, longterm steroid use can make test negative. I think thats my case now. Hang in there. Kathy

abbasgirl
05-31-2009, 04:53 PM
(((Hugs))))

Hang in there.

I'm assured by my intelligent, caring pcp that we do eventually get our diagnosis.

lucky7
06-01-2009, 02:58 PM
Hi Brittanee!!! Just want to let you know that im hanging right there with ya my friend:cute: Im going through that very same thing myself, you are not alone and please know that we are here for you!!!!!

Numpty
06-02-2009, 02:29 PM
~leaves a whole bundle hugs~ Keep your chin up!
I've always had negative ANA too.. in fact, the only level I've ever had as being abnormal is my ESR level (which this time was only very slightly raised at 22 when I think normal is up to 22) but my Dr decided to treat me with Plaqunil (spelling?) and as it has worked a charm I got a diagnosis of SLE with mostly negaitive blood work.

K.Grams
06-03-2009, 03:36 AM
Hang in there..just don't give up or feel like it'll never happen because you WILL get a
straight answer!

My Rheumy had told me for 4 years that I was "lupusie" and that I didn't have enough
critera to be diagnosed with lupus and then finally last year I was offically diagnosed with
SLE...

I hope the treatment plan they have for you works and I hope you're feeling good!