I am beginning to question when my doctor told me that my test was negative for lupus. I feel I have many symptoms and in my own research, there is no one diffinitive test for lupus; it is a combination of test results.
Anyone have information or a good source for me to look into? My next appt is in a month, so I want to be well-educated before then so I can talk to my doc about this.
Thanks in advance!
Sometimes tests can be negative, and you still can have lupus or another AI disease. My ANA and some other tests like sed rate bounce around. That's when you have to seriously look at symptoms, and need a great diagnostician. Ben's friends also has a lupus community, so if you have questions go here: http://www.lifewithlupus.org/ and there is in the groups right here one for those with fibro and AI issues, plenty of members. go here: http://forum.livingwithfibro.org/group/fibro-and-autoimmune Lots of good info either way.
hugs, and I hope you get sorted out quickly!
Hi ChrisAnne
I have lupus and also am on the lupus site. Some doctors will diagnose lupus based on symptoms. You can go to web md and the lupus foundation both have good information. What kind of symptoms are you having does anyone else have lupus in your family. Some doctors want to wait before diagnosing lupus because of insurance and life insurance reasons. Did he put you on plaquinill the other name is hydroclorine my spelling is horrible. You can message me any time if that would be better.
PB
I have been tested for lupus too and the tests don't show that I have it. I understand that the levels can vary depending on what your body is doing at the time of the blood draw. FM and lupus have many symptoms that overlap, making a definitive dx very tricky and sometimes it takes a long time.
Like kholmes, I have symptoms of Lupus, MS, Sjogrens too and have been dealing with all this for several years. Fibro can be pretty rough - the fact that it isn't taken seriously by a lot of folks, doesn't make it any easier.
mjones
I don't suspect Lupus with myself but if you feel it fits for you, I'd keep digging into the possibility. In my case, I ended up being diagnosed with the hypermobility type of Ehlers Danlos Syndrome. It's a genetic connective tissue disorder that causes bad collagen production. Basically, i have "bad glue". I had to keep at it until I finally got a diagnosis. One of the things I did was to make a list of all of the symptoms of EDS that I had and how they affected me. it helped them to see the diagnosis I think. I took down as much family history as I could too because EDS is genetic and I could see it in other family members. Not sure how helpful that is but I hope it helps a little.
Susan W
I have been dealing with this since early this year. Started seeing a rheumy and to make a long story short, still no definitive diagnosis of Lupus. My ANA test came back positive, but that was the only blood work that came back positive. I have a lot of symptoms that point toward Lupus, but the doctor still won’t diagnose. However, I am on Cymbalta for chronic back pain and Fibro (just diagnosed as I probably have), Mobic, and Plaqunil (the drug for Lupus and RA and other autoimmune diseases). My family doctor wants me to see a different Rhumetologist in the same practice who she feels has more knowledge of Lupus. So, looks like I’ll be seeing a different doctor and maybe you should try and see a different doctor? I find that we have to be our own advocate because the doctors just want to say try this, try that and it may take a few before you find one that listens to what you say and you feel works with you.
There are a huge amount of people here with lupus as well as fibro. There's even a group for people with both at http://forum.livingwithfibro.org/group/lupuscoexistingwithfibro but only 14 people have chosen to join it or have even found it. I have a lot of negative tests but my first diagnosing Dr. diagnosed me the old fashioned way, if you have 11 out of the 20 distinguishing symptoms, he treats patients as if they have lupus. I also have MS symptoms, but lupus can affect the same areas of the body that MS affects, and lupus can destroy the myelin sheath on nerves just like MS does, so they don't know whether to call it MS or CNS (central nervous system) lupus. My current Dr. is quite a stickler for having all the positive blood tests, which I don't, so she calls it "lupus-like syndrome with fibromyalgia"..
My original blood draw when I was diagnosed with Fibro showed that I had a positive panel for Lupus. At the time my Rhumy said a positive panel doesn't mean that I have it. 12 years later and negative blood tests for Lupus my doctor now will not say I have it. I am convinced as other responders have noted it depends on the time of the blood draw itself. I have EVERY symptom of Discoid Lupus but still can not get a diagnosis. So sorry to hear about your experience. I hope all goes well for you <3
I think if it's something you feel strongly about pursue it. I too have many symptoms of Lupus, MS, Sjogrens, CFS, meniere's disease and who knows what else. Sometimes I wonder if FM is just the catch all when they can't figure out what's actually going on with us. I don't know. When they ran all the different tests, at all the different doc/specialist EVERYTHING came back normal - seriously began to wonder if I really was just going crazy! Not sure I'm much help. My two cents: thoroughly research it out and get support from anyone/everyone that gets what it like to have the same issues/symptoms you do.
Take care & good luck!
Sorry.
I to felt as though I have lupas my rhuemy told me to quit trying to find a different diagnosis and just except my Fibro. I know that doesn’t help just you aren’t alone I agree about fibro being a catch all when they can’t figure it out. Research it like they said hopefully you will have a great dr who will listen and take you seriously. Wishing you the best:)
I am with you on that I consider the fibro a symtom,not the reason for it.Too many doctors want to leave it there,and give up.Slowly they are finnally doing some research ,bless these doctors. Like a runny nose ,vomiting,or a sore throut many things can cause it.Finding out which and why is what we need as I don't think everyone of us has the same thing.
I have lupus. My ANA is negative, and when I lived in the USA, the doctors accepted that it is possible to have negative ANA lupus, in fact you can have lupus with a number of negative tests. But here in Canada, they absolutely deny that I have lupus, even though I have the same inflammations and problems that I had for 20 years in the states when they all treated me for lupus. My Dr. who originally diagnosed me with lupus did it by symptoms. Many doctors use the criteria that if you have 11 of the 20 main symptoms, they treat you as if you have lupus. Here I am on my own, which I guess is fine since I react to almost every prescription anyway, so I research natural alternatives.There is a lupus group here in the FIbro website
http://forum.livingwithfibro.org/group/lupuscoexistingwithfibro
and a Ben's friends group for lupus that is laid out exactly like this site.
It is funny how every Dr. makes up how they are going to diagnose someone. In 1989 I to was diagnosed with Lymes disease and some other auto immune problem's. Also had a ANA of 890 so they diagnosed me with lupus do to all the symptoms I had. Received treatment for both then moved from California to Illinois 5 years later said no we don't think you have lupus not sure why I'm still having the same symptoms. Sometimes I'm so confused. Yes you had auto immune problems Lyme,CMV and Pravo B virus which caused you to develop fibro and chronic fatigue. Yes I too react to a lot of prescriptions, so I'm trying to go natural with juicing and vitamins.