still not convinced I don't have Lupus and also question about positive ANA in other family members

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hpymomof3
Regular Member


Date Joined Oct 2011
Total Posts : 66
   Posted 2/19/2014 2:31 PM (GMT -6)   
I was diagnosed with fibromyalgia 4 years ago. I have steadily worsened and seem to keep on developing new symptoms. I do believe that I have fibromyalgia but some things make me think that there is more involved. I always hurt all over but they are at the specific tender points common with fibro. I also have severe low back pain but I think that is actually another separate problem. I also have joint pain that seems to flare. I just got over a flare where my knees hurt so bad that I could barely walk and my big toe, thumbs and elbows really hurt too. The flare lasted about two weeks and now seems a bit better. I am constantly tired. I know this is common with fibro but up until the past 4 years I was in reasonably good shape (average weight and physical shape) but now I'm exhausted just going to the grocery store. I've noticed the last few summers that I am very sensitive to heat. It never used to bother me before but now I feel physically sick if I'm out in the sun too long and I tend to get a rash, especially on my face and chest. I sometimes get a rash on my face at other times but of course it hasn't been present when I've had an appointment with my rheumatologist. The cold also really bothers me and over the past few months I think I have developed Reynaud's syndrome. This has not been diagnosed but whenever by body gets cold my hands and fingers start to turn blue. My hair has also been falling out a lot as well as my eye lashes. My eyes have also been very dry. I have had a positive ANA twice but my doctor took other tests (I don't know what they were) and he told me those were negative so I don't have Lupus.

My daughters both have had health issues in the past. about 6 years ago we thought that perhaps my oldest daughter had Marfan's Syndrome. Even though she is short she had some of the other symptoms (long limbs, protruding collar bone, eye problems, hyperflexibility, elevated ANA. We went to a few different specialists. They ruled out Marfan's syndrome but at the time she was told she had some kind of a connective tissue disorder. They just told us to keep an eye on her to see if she developed any other symptoms, which she hasn't but she is only 21.

A few years later my other daughter (around 14 at the time) was having a lot of medical issues so she was put through a lot of testing. A lot of her issues were resolved but I am taking her to sleep specialist tomorrow and I was looking through some of her old medical records. I found that she also had a positive ANA. Again, I think with further testing nothing showed up so we haven't done anything else with it.

Recently my we found out that my 15 year old son has a protruding chest (pigeon chest). His doctor didn't say anything about it possibly being related to an autoimmune disorder but upon further research online I see that it can be. Should I be concerned about him too?

It really didn't dawn on me until recently (blame my fibro fog) that my girls also had the elevated ANA. Lupus does run in my family (my aunt and cousin have it) so now I'm concerned that my kids and I all have some kind of an autoimmune disorder. Is it normal for all 3 of us to have a false positive ANA or is it something to be concerned about. Do you think I should have the kids tested further.

I feel that I need to do further testing for myself since I continue to go downhill and my understanding is that fibro doesn't get worse. I'm just not really sure what doctor to go to since my rheumatologist dismissed the possibility of Lupus and didn't seem concerned when I told him about the heat sensitivity and rash.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 2/19/2014 6:40 PM (GMT -6)   
Positive ANA does not mean you have lupus. It does occur in many who do but just because you have it does not mean you have lupus or that you will get it. ANA is not specific to lupus and can also be associated with other diseases but is often present in lupus patients.

Diagnosis is from a combination of clinical symptoms and labs and each case is a little different. ANA is just one part of the diagnosis puzzle.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 2/19/2014 7:03 PM (GMT -6)   
Comments from Dr Gourley at NIH on ANA made on another forum.

"Dr. Gourley: Antibody status can sometimes change, depending upon therapy, how much antibody there is to start and what type of antibody it is. Remember, the ANA is not specific to any disease and doctors see the ANA in so many illnesses that we need to tie it to the patients symptoms. The symptoms are more important than antibody status."
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Akkami
Regular Member


Date Joined Nov 2013
Total Posts : 340
   Posted 2/20/2014 6:41 PM (GMT -6)   
hpymomof3,

I'm sorry you are going through this. I too do not feel my Fibro diagnosis is the whole story. I keep getting worse and keep getting new symptoms that don't seem to fall under Fibro. Now my hands get very red and blotchy. It's like they are on fire most of the time. I also have Optic Neuritis. All of my blood work comes back normal thohgh... I hope you are able to find some answers and some relierf.
October 2013- DX with Fibromyalgia
December 2013 Brain MRI shows abnormality. MS doc says it’s not typical of an MS lesion.
January 2014 Lumbar Puncture shows normal.
February 2014 DX with Optic Neuritis.
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