LUPUS UK

Negative ANA, Positive DS-DNA, Elevated CRP-HS and low white blood cells

I was an athlete, now I have a hard time doing short walks or cycling once or twice a week. For the last 3-4 years, I have been feeling tremendous fatigue, brain fog, complete lack of energy /motivation. Occasionally, I feel like I am drunk and slur certain words and I am not on any medications nor do I drink alcohol. All this comes and goes but the fatigue has been almost continuous for the most part. They mentioned stress and depression but it is neither. With that, I am starting to feel some depression because I am not doing what I used to do and am just so tired all of the time. I have been to two doctors and since I have negative ANA they both think it cannot be lupus. My dad had lupus and died of lupus-related problems. They both can't explain why I would have positive DS-DNA but negative ANA. Does anyone have this with their blood tests? If so, any explanation from your doctor. I am so tired of being tired all of the time. Thank you for your help.

10 Replies
oldestnewest

More info.... My WBC has been low on every blood test for the last 10 years. My most recent blood test the results were WBC 3.3, DNA DS was positive at 16, CRP-HS was high at 2.44, ANA was negative at <40 tilter <40.

Reply

Well I sometimes use a Sjögren’s forum and this exact topic has been discussed recently with others with positive ENA panel (Ro & La, DSDNA) but negative ANA. In fact the prompt for debate was a paper saying that negative ANA often means more specific antibodies aren’t being checked with several forum users saying that this would have prevented them from being diagnosed with Lupus or Sjögren’s.

I know people with negative RF who have high anti CCP and confirmed erosive RA for example. So I’m surprised that, with positive anti DSDNA, this doesn’t overule the lack of less specific ANA for your two rheumatologists.

But I know for myself that some specialists can be overly rigid about guidelines, which were only ever drawn up after all by a bunch of rheumatologists and never meant to be rigidly adhered to.

As my first rheum used to say “Rheumatology is a very inexact science and rules were made to be broken”!

2 likes
Reply

Hi we are sure my dad had somthink autoimmune my sister is having tests done for autoimmune related problems I have ctd and it looks like my daughter has an autoimmune problem so I do think it is passed down but one negative ana test result ? I’ve had 5/6 some pos some neg the tests were done over 2 yr

Reply

Hi hawing irk

I'm sorry to read of your diagnosis difficulties and change of active lifestyle due to illness!. Must be really tough for you trying to adjust!

It's a bit unusual to have negative ANA and positive anti dsdna because it's a more specific result!.BUT someone on here with medical knowledge may have the answer!.

I'm just wondering whether it's worth you checking that the negative ANA result was correct?.. Labs can make mistakes!. With your strong family history I can understand you being concerned and specially as you've been to two rRheumy's who can't explain it either!. I would also say that ANA results can fluctuate over time for different reasons so you must get re- tested from time to time to see if it goes to positive!. You must keep fighting for answers which I know is hard when U unwell!. Are you going back to one of the Rheumy's to discuss how you are?.

You could also do with being tested for sticky blood because of some of your symptoms if you haven't already!. Hope I've helped and you get some answers soon. X

2 likes
Reply

Thanks for replies. I need to add that I have not been to a rheumatologist. I have only been to an internist (not so great) and a homeopathic doc (who has been great). The internist will not refer me to the rheumatologist because he said there is not enough evidence that I have lupus. I called and tried to get an appointment myself but I need a referral. It's tough because I live on an island and there is only one rheumatologist. The holistic doc did prescribe low dose naltrexone which has helped a lot with brain fog. The fatigue though is still really bad and has not changed. I also have constant headaches that turn into migraines half of the time. I have had more than one ANA test both have been negative. Also, more than one DS DNA and both have been positive as well as the CRP-HS positive three different times.

Reply

In my opinion all of the things you mention do warrant further investigation by a rheumatologist (especially given the family history ) - it's not the internist's job to decide whether or not you've got lupus. Is it possible to get a referral from your family doctor/general practitioners rather than the internist? Follow your gut instinct and keep pushing for a referral. There are many of us on this forum that have had to fight to get a proper diagnosis and sometimes it takes years unfortunately.

In the early stages of what I now know is lupus, I too had low WBC and fatigue, morning brain fog and problems finding words but no doctor thought of testing me for autoimmune issues so I'm not sure what my ANA was. Like you the docs thought i was depressed. .. It then progressed to include joint pain and stomach issues but still no one tested me. It wasn't until I moved house and got new doctors that I got diagnosed, but by then I was feeling worse and I had positive ANA, dsDNA, Ro and La. Good luck!

2 likes
Reply

Agreed it's not his job. Although he was my primary practitioner. I will see if my holistic doc will send me a referral. I am just wondering why my DS DNA is positive and my ANA is negative. That is what everyone seems to be hung up on. I don't have joint pain or stomach problems. Just muscle soreness in general (like I had a hard workout when I haven't). As well as other issues that I did not mention before such as my hair falls out so I have different layers of regrowth, sores occasional in the roof back part of mouth, can't get enough sleep (I could sleep all day long). Constant headaches. Occasional pain in my heart.

I am finding I need to be my own advocate as you said. Although my holistic doc has been so helpful in testing for everything and thinking outside the box. I am grateful to him.

I hope you are getting the help you need. Anything help with your fatigue at all?

Reply

My fatigue only improved once I got my lupus flare under control with the right meds. However, it was a long trial-and-error process.

The dsDNA test is more specific for lupus than ANA, and the fact that is was positive more than once means that the tests were likely not to be false positive tests. Usually the ANA is also positive at diagnosis, however, ANA levels can fluctuate, as others have indicated.

Given the positive dsDNA plus the low WBC, family history, and physical symptoms, this should be enough to warrant a referral to a rheumy, even if it may or may not be lupus. It's the rheumy who needs to run more tests to figure this out, so I am not sure why your docs feel they have the expertise to say you definitely don't have lupus (or any other autoimmune disease). Please keep pushing for answers! Find another primary physician if you have to. Keep us on the forum updated, and good luck!

2 likes
Reply

I'm wondering how you are doing. I wanted to share my story with you..2yrs ago I had Lupus symptoms and I didn't want to believe it because I too had a negative ANA but positive dsDNA of 102, high CRP, and other abnormal labs. I had so much pain in my joints along with fatigue, headaches, muscle spasms, and at one point I had MS symptoms. (Lupus is the great imitator!) After undergoing many tests, seeing 6 other specialists and even ruling out Leukemia I was referred to a Rheumatologist who ran more tests. He thought the lab dept had made an error so he ran them again because he couldn't understand why my ANA was negative and my dsDNA was positive. I had many symptoms of Lupus but still refused I had it. He prescribed plaquenil twice a day in 2016. It's been 2yrs with some improvement in my labs and symptoms however in 2017 I was diagnosed with Fibromyalgia which I am also being treated for. Can't say everything is under control yet but I am thankful that I was diagnosed so that I could be properly treated. Every day is a struggle but I am not giving up without a fight.

I hope they soon diagnose you and you are treated soon. God bless

Reply

Thanks for your reply. Still waiting. I have another blood test coming up. I really don't have pain other than muscles feel sore like I worked out even when I didn't. My biggest complaint is fatigue sometimes extreme. But it really never goes away. I do have migraines which may or may not be related. I have been on LDN which is helped my brain fog and fuzzy head almost completely. So that is awesome. I hope you continue to find the right help and meds that work for you. This is such a grey area. Such an unknown. My doc also thought test were inaccurate ran them again with the almost the same results. ANA negative and positive DS DNA.

Reply

You may also like...