[Allyson]

Hello

i have just been told i have lupus but have negative bloods for it...I have most of the 11 symptoms and it all started with teenage migraines and glandular fever when i was younger. Im 44 now.


the latest symptom which started this month was the malar rash, it was this in addition with the flu like pains, joint pains, headache, exhaustion, bright blue fingers and increasingly red chest rash, which kicked me up the butt to get in touch with the consultant who is treating me for hughes syndrome.

He said he thinks that the lupus symptoms are becoming more of a problem for me now, i asked him if this meant i had lupus, he thinks it is extremely likely.

do many people get the lupus diagnosis with negative bloods?

My gp is very sceptical of the diagnosis despite years of the symptoms being there.

the consultant advised i should be given a short course of steroids (30mgs over 5 days) and am onto day 4 of that course, but feel no better. I am now doubting myself and crazily thinking am i imagining all this! (like you could eh!) Do you think i could be rushing myself getting better and not given it enough time? And would you go to see the sceptical gp again next week, i am sure he will dismiss my symptoms, and the consultants view, yet again!

thanks

Ally xxx

 

[sam101360]

Ally:

Welcome to the site! Everyone here is warm and wonderful about answering questions, so please ask any you may have. The chat room is a great place to "meet" the people you share posts with, so we hope to see you in there soon.

I have Lupus, and almost always have negative bloods (I only had one positive ANA and some occasional oddities). I started out with a rash on my arm that was biopsied and DX SCLE, the SLE symptoms (DX) and APS Dx came later after that.

I am sorry that you are not seeing any improvement with the steroids, I know for me they are a "quick fix" but that is not always the case for everyone.

As for the Sceptical GP...I know how hard it is to change Drs, but perhaps you could call the Rhumy and ask for a recomendation for a local Dr to follow your care and work with him on the treatment of the Lupus. I am not sure where you are located, so it would all depend on your medical system and insurance coverage.

I hope you feel better soon!

Stephanie

 

[iksyfaye]

Hi,
I agree with Stephanie, if you are able to get a second opinion, repeat bloodwork, etc. I don't know if you have already seen a Rhematologist? (forgive me if you have and my "brain fog" is kicked in...again), is a consultant a type of Dr., too? And has he/she spoken with your GP who is skeptical? It is so hard when we know how we feel, and something is not right...yet often you cannot tell it by looking at us... I know everyone is different, my first ANA was very low...over the years, each time it became fairly consistently higher with 2 patterns...but, some of my other markers have been "normal limits"...When I did agree to see the Rheumy, it has made a huge difference...however, I know it can be hard to get second opinions, and/or change Dr.'s what with insurance, etc. I have not taken steroids yet, Dr. has 1st started me on Plaquenil, so I cannot say about them...I hope you can get some help soon, and feel better...
I

 

[sarah-pearson]

Hi Ally, do i know u :lol:
i have just read your post and thought to myself.....wow i must tell ally that there is someone on this site that has neg bloods and similar symptoms to you :rotfl:
and it is you....welcome mate xx
lov sarah aka scooby:lol:

 

[lazylegs]

Hi Ally,

:welcome:

It is possible to be diagnosed with Lupus having negative bloods. However it is not the norm. The doctor will make the diagnosis from the symptoms alone if you meet enough of the criteria. The blood work may change to positive over time, but it may not.

Sorry to hear the steroids have not worked for you so far. I would try to contact the consultant or the nurse to let him know you are still feeling poorly.

Take care,
Lazylegs

 

[onetay]

Ally,
Hi and welcome to the site. I do not know about others on the site but I can tell you, I am one that has never had the labs come back neg. My dermy found my lupus with a biospy. It is possible to still have lupus even with no lab conformation.
I am not sure who your gp is but most gp's are not up to date on lupus and most don't treat lupus either. You should see a rhuemy to have things checked out completely. I wish you the best with the upcoming appointment and let us know how it goes. We have a chat room that you can get instant feedback from questions and make new friends I hope to see you in there soon. I hope you are feeling well and doing well.

 

[Merle]

Hi Ally

I am yet another who has been diagnosed with lupus based on symptoms together with low complement C3 and white blood cell count, and a negative ANA. You're clearly in good company here.

Take care

Merle

 

[Katharine]

Hello Ally and welcome

I'm sorry that you are still not feeling any better despite the steroids. I would get back in touch with the consultant on that score. He needs to know what effect (or lack of effect) they have had.

It is possible to have lupus with negative ANA even if the percentage is only about 2-5% of patients. As for the other lupus specific blood tests, there are different percentages of presence for each of those bloods in people suffering from lupus. For example, not all patients have positive anti dsdna.

I have negative ANA but have other bloods which come up positive and also have had a positive skin biopsy.

It sounds like you have a good consultant but I'm afraid I'd seriously consider changing GP. GP's who don't want to "listen" to what someone more specialised is saying tend to ring alarm bells with me. My GP is invaluable. He acts as my backup and my support. He's there for all the "in between" specialist times. He also has copies of all my different specialist reports (as I do) plus his own notes on the in between visits.

It is very easy to doubt yourself and I must admit that even now I can catch myself doing that from time to time. I think it comes from the sheer complexity of the disease (and certain docs' scepticism). I remember once saying to my rheumy that I felt like a hypochondriac because every time I'd go and see her I had such a long list of "complaints"...she immediately replied that that was an idea I had to banish from my head. I've found it easier since then, almost as if I needed someone qualified to tell me what I already knew.

You've come to a great place here for support and advice. If you have any questions, don't hesitate, we'll all try out best to help.

hugs :hug:
Katharine