totally deflated, negative blood test results, dismissed by rheumatologist

[Kerryann82]

sorry for the long post, for the last 5 years I have experienced a number of life altering symptoms suggestive of autoimmune/lupus, I had some blood test results come back as positive for APS and also suggestive of SLE. Unfortunately at the time they also found I had latent TB so I have had treatment for that for the last 6 months tha with a view to commencing hydroxychloroquine as an initial step once free from TB.

As I finished the TB meds I went into a flare up and have been unwell for the last 6 weeks, really struggled with pain, fatigue, Malar rash etc (probably the worst flare up yet)

I have felt that unwell on occasions in the last 6 weeks that I had considered going to hospital as I literally felt that I might not make it thru the night. I’ve felt that unwell I have had writtem letters to my children in case I didn’t wake up.

I’ve had the first appointment with rheumatologist ( never seen this one before) last week and he has told me that I actually don’t have lupus as all the blood results are ok and that he doesn’t know why I have these symptoms. He doesn’t want to look into any other potential reason why I am in so much pain or why the flare ups come etc.

I ended up going to my local urgent care tonight as I have been feeling dizzy with blurred vision and they have also just said well no it’s not lupus and we do t know why you are experiencing these problems. No plan has been made to investigate things further or from a different angle.

I feel like the past 5 years have totally been a blur. Like I have made up all my symptoms. I feel guilty if there is nothing wrong, maybe I should have been more resilient or braver with the symptoms and just got on with things.

I experience daily: nerve pains and joint pains ( widespread), Malar rash with burning blisters on face, involuntary jerks of limbs, what feel like mini seizures in the night, fatigue, photosensitivity +++, finger nails are so painful and like growing extra skin underneath, hair loss and bald patches, psoriasis type sores on scalp

If I get any type of infection or virus, I go into a flare up where I struggle to mobilise with the nerve and joint pain, fatigue +++, feel like elec currents being passed thru my body, this is really painful, I’ve had to take so much time off work as a nurse, my husband and children have all been negatively impacted by my health in the last 5 years,

I just do t know where to turn now, I am so upset and feel that I must be imagining all these symptoms and I have put my family through this for nothing if there is nothing wrong with me.

All along my GP has called it lupus and APS and probably sjoergens but it seems like it is non of these accordto the rheumatologist.

Any advice would be greatly appreciated, feeling like I am at the end of the road with it all and running out of energy to fight

[KayHimm]

What was the APS test that was positive? I was given a diagnosis of undifferentiated connective tissue disease many years ago with a negative ANA but positive anti cardiololopin (false positive tests for syphlis at that time).

I would discuss with your GP the possibility of getting a second opinion. Another rheumatologist may see you as undifferentiated connective tissue disease. Also, there may be tests they can run to see if your APS antibody is causing a cross reaction- making your ANA negative.

A neurologist might be able to run some of the newer tests for neuro lupus.

Try to get to a lupus center.

Kay

[Kerryann82 in reply to KayHimm]

It’s was the cardiolipins one I think, positive twice twelve weeks apart x they re now even denying that was positive and said they don’t know what I am talking about. I just do t get it at all, feel totally gas lit x

[FredaN in reply to Kerryann82]

One rheumatologist I saw said all my blood tests were normal, ANA negative, nothing to suggest any kind of autoimmune disease. I asked for copies of the blood test results to be sent to me, so I could check for anything borderline. Lo and behold, they sent me the test results and the ANA said it was positive! I later found out C4 was low and she should've tested for APS antibodies if she'd bothered to do a physical examination.

If you can, try to get copies of the blood tests they've done. I don't know if GPs can get copies of them, if they won't send to you directly. It sounds like your GP is on your side. Sorry you're going through this, I know what it's like.

[Kerryann82 in reply to FredaN]

I have managed to see some of my results which are showing widespread inflammation, white blood count and lymphocytes all massively elevated, most other things are either at the low end of scale or high. He just does seem to want to consider that the results are not normal for ME and although they might be just within normal range, for them all to be nearly out, maybe significant when u put this together with all my symptoms, just seems common sense to me as a nurse, I am baffled why he doesn’t seem curious enough to want to consider things x

How did u eventually get on after u found that they were actually positive? X

[FredaN in reply to Kerryann82]

I'd already asked for a second opinion at the second appointment, before I found out about the blood test. I have nailfold haemorrhages, so I found the name of someone who capillaroscopies in my area. When they asked who I wanted a second opinion with, I said it could be with her too, if she was willing. It took a bit of chasing up and another 3 months of waiting, but the capillaroscopy showed abnormalities, I found out about other blood tests, she did a thorough physical examination and agreed it looked like a connective tissue disease. After running more blood tests, anticardiolipin came back positive. Apparently because it's IgM, it wasn't necessary to do anything, but now I also have β-2 Glycoprotein 1 antibodies too, so I have an appointment with haematology soon. I still feel like we're very much figuring it out, so not entirely sure what to expect.

[KayHimm in reply to Kerryann82]

Kerryann82 -

Just taking a shot at this from the information you have given us.

I have a feeling they don’t see your rash as related. If they did, they would be less certain because the lupus malar rash, when they see it, is quite specific to lupus. I have rashes like yours from Dysautonomia and from rosacea. Only once did they suspect a true butterfly rash. Most people couldn’t tell the difference.

Some of your symptoms sound neurological to me. I wonder if your doctors are minimizing these. You need to get those positive anti-cardio lipin tests. Just because you need a medium titre to meet lupus classification does not meet they aren’t significant in low titers in some patients. They can and do cause a hypercoagutive state, which is how it is described to me.

You need to find a neurologist who specializes in autoimmune diseases, particularly lupus, to see if your vision issues and other things are related to these antibodies.

I don’t know where you live but you have been ill a long time. There are some excellent doctors focusing on neuro aspects of autoimmune disease. That is your best bet to find out what may be happening.

Also, ANAs can go from negative to positive. Many of us have fluctuating ANA.

Upward and onward.

Kay

[Kerryann82 in reply to KayHimm]

Thank u so much that’s really helpful x x

[KayHimm in reply to KayHimm]

In case you want to learn more about the syndrome, look up neurological symptoms in APS or non-criteria symptoms of anti phospholipid syndrome.

I am not saying you have it but if you can get those lab results, it is worth having an expert evaluate you.

Find a neurologist who lists lupus and APS as interests. This is not a common thing. One reason you may relate to lupus symptoms is that APS is sort of on the lupus spectrum.

XxK

[Kerryann82 in reply to KayHimm]

Yes definitely I’m open to anything being considered to get to the bottom of things x

[StriatedCaracara]

I was told by local NHS rheumatology that I did not have systemic autoimmune condition like SLE as I walked into the room. This could have only been said in response to my GP blood results. I had not been examined or discussed symptoms at this point.

I had about a dozen symptoms, including Lupus ones from the old 'more than 4 of 11 classification'.

My ANA was 1:320 speckled.

I wanted to try hydroxychloroquine (HCQ) as the over the counter aspirin I was taking was not doing much.

I emailed the London Lupus Centre giving an overview of my bloods, and a list of my symptoms, saying I wanted to try HCQ - Was there 'any specialist' there that might see me. After being emailed, I then phoned to discuss things further.

My diagnosis is now UCTD (ANA positive, anti ds-DNA negative).

I am being treated succesfully there. It is private. Different consultants are attached to different NHS hospitals and use different online technologies.

healthunlocked.com/lupusuk/...

[Kerryann82 in reply to StriatedCaracara]

Thank you for replying, yes it was like he had already decided before I went in the room. I suppose all I really hoped for and expected was an opportunity to discuss my many symptoms alongside my blood results and jointly come up with a plan x glad you managed to get sorted eventually, I am still in shock that autoimmune patients are made to feel this way, it’s disgusting x

[StriatedCaracara in reply to Kerryann82]

That is exactly how I felt, then I had a chance to find out from this forum what others did. It made me stronger and I looked at London Lupus Centre, watched online videoes of the specialists they suggested to see if I related.

I made my first appointment and had it. Meanwhile my GP who knew I had got a lupus spectrum condition said he would refer anywhere in the UK so I could get help. I guess they see lots of their referrals ending getting nowhere despite their suspicsions

He did not know I had found somewhere.

I did not want to be fobbed off by another NHS hospital tryng to reduce its caseload and its work and behaving in an appauling way.

(I needed counselling to get over the trauma my local NHS caused so knew I needed to fund that too. Wren project is free though and I found that brilliant after I got my diagnosis.)

I have since learnt that there are a few NHS hospitals that have a consultant with an interest in UCTD, but for me London Lupus Centre has filled the gap.

[Kerryann82 in reply to StriatedCaracara]

Does the ANA always come back as a number? The results the med sec has sent me just seems to say ‘negative’ - speckled x

[StriatedCaracara in reply to Kerryann82]

In the past people were diagnosed with sero-negative lupus.

Different test methods are used. It is not standardised and results can change.

With the method that was used for me the sample is continually diluted until the antinuclear antibodies are not detected.

The dilutions are 1 part sample to 40 parts dilution agent.

It then gets diluted by the same amount so in it one part sample, to 80 parts dilution agent.

Dilution happens again and again..

So possible results are in the series: 1:40, 1:80, 1:160, 1:320, 1:640, 1: 1280, 1: 2560, 1:5120 etc etc..see the pattern.

The higher the ratio the lower the fraction of the population that has that amount of antinuclear antibody.

1:40 can be see a lot in normal population, but 1:80 is less common, 1:160 much less common and so on.

There are other methods too. Suggest you ask what method was used and what number (or titre ) associated with your speckled pattern result is.

Anyway bottom line is in the past some people could get diagnosed with SLE with a negative ANA.

This articles suggests 30% don"t have a positive ANA at any one time:

healthunlocked.com/lupusuk/...

[Kerryann82 in reply to StriatedCaracara]

Thank you for taking the time to msg it’s really helpful x

[StriatedCaracara in reply to Kerryann82]

I did this survey yesterday. I think there is a category for not yet diagnosed at the end.

Questions can be missed out if they do not apply.

healthunlocked.com/lupusuk/...

[Numptybrain]

I have bilateral pleural and pericardial effusions with all the symptoms of lupus sle but not showing in bloods so although fist rheumatologist ignored me completely but still put me on MMF because evidence of inflammation is all on CT scans of my lungs, unfortunately my stomach couldn’t tolerate MMF when it was increased. My respiratory consultant wanted a second opinion from another rheumatologist as the first one was horrible. My new rheumatologist is brilliant, he doesn’t think it’s lupus he’s more suspicious of seronegative RA sjogrens and another CTD and now put me on waiting list for RTX infusions as he said I need a stronger medication to help with all the inflammation.

Take care

Wendy xx

[Kerryann82 in reply to Numptybrain]

Thank you for taking the time to reply, it’s so helpful x

[Pumpkin2009]

I agree with Kay. As I was reading your symptoms, I noticed all the ones that sounded neurological.Your face rash does not exclude the sides of the nose like a malar rash is supposed to so that is probably why it was discounted. You definitely could be dealing with dysautonomia and it could be linked to an autoimmune disease. I have a diagnosis for lupus, but also for dysautonomia. My neurologist has been extremely helpful linking all the symptoms and conditions I have. That said, you have to find one that understands autoimmune disease. Don't give up. The most important thing to know is you are not making anything up. Most of us have been gaslighted by physicians. Also, my experience with many rheumatologists is that the focus on certain areas and don't look further. Hang in there.

Healing hugs and hope.

[Kerryann82 in reply to Pumpkin2009]

Thank you so much x