Let down again because blood tests all negative despite many symptoms!

I have just been seen at Guys Hospital....I did not get to see the consultant I wanted (experienced in seronegative lupus) and I have been Let down again because blood tests and back all negative. This is the fifth rheumatologist I have seen who refuses to believe I have lupus despite all these symptoms;

Joint pain

Muscle pain and weakness

Fatigue

Dry vagina

Painful sex

Headaches and memory problems

Facial rash (permanent)

Photosensitive face

Frequent sinus infections

Cold fingers turning pink/purple in the cold

Unable to regulate body temperature

Mouth ulcers

Digestive issues

Thigh muscles swelling

Plantar fasciitis

I'm sure I have forgotten a few but that's most of them.

I am just so fed up of being in pain every single day and not getting answers as to why! I have been on Hydroxychloroquine for a few months which helps a lot with my joint pains so if this is working it's obviously autoimmune. I just want someone to say yes I agree it is lupus/ Sjögren's or whatever and one day my blood tests will catch up!

So sad :(

29 Replies

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  • I have fibromyalgia too which seems to complicate things as they cannot see beyond that!

  • Well, some people don't get antibodies. In my opinion, you did well (you had the guts to see 5 of them who were all dismissive - not sure if I would cope with that ..). I have only seen two of them. Why are they not discharging you if they thought you didn't have it? Tell me? Diseases happen and diseases don't care how they manifest (with or without antibodies). It's the MDs who need to CATCH UP! Not you or not your antibodies. People's immune systems aren't the same! Lupus isn't a single disease. It's a Syndrome. They are only diagnosing certain type of lupus patients, not all of them. You are simply let down by the slow progress in Rheumatology.

  • I have been to three different hospitals and seen five consultants. How do I find someone good who will look beyond blood tests? I'm at my wits end.

  • Anna I totally understand how you are feeling. Whereabouts are you in the UK? I can let you have the name of my Rheumatologist and hospital, she diagnosed me with Lupus and APS, I have never had a full positive ANA, she looks outside reliance of blood results and looks at you, the patient, your history, and how you present on the day, in other words the whole picture.

    12 years it took for me to be diagnosed, she being the first Rheumatologist I saw, she literally saved my life, and my sanity after years of being dismissed by so many consultants, as a hyperchondriac, attention seeker, depressive, etc etc, thanks to my GP and my own self belief, I refused to be dismissed, and kept on at the system, until finally one day, one set of blood results were totally and utterly abnormal.

    Let me know if you would like her details, and I will PM you them.

  • Hi Karen, thank you so much for replying! Myers please pm me with a name so I at least have some hope. That is exactly how I feel and I am close to giving up. I know something is wrong though and I'm sick of feeling like this just because I am complicated as they keep telling me! Lol.

    Thanks :)

  • I can sympathise with you, I swear I could put Coca cola in as a urine test and it would come back clear. All I can say is keep your chin up, keep a diary of events and Good luck.

  • Hello, I totally understand what situation you are in, I too was recently seen at Guys Hospital. The staff were lovely, very overworked and I do not have a bad word to say about them...........BUT I think I have seronegative APS, had 4 Miscarriages (could have gone on to have more but gave up trying), prem baby, was thought to have MS last year (I do have lesions on my brain but Neuro says not MS) I have word finding problems, balance issues, feeling of pins and needles in my shoulder/back, fatigue and awful joint pains, I am also on thrroxine after having most of my thyroid gland removed many years ago (Thyroid developed a multinodular goitre after I had Scarlet fever)

    I had to fight for 5 years for thyroxine as my TSH was always normal and T4 right on the bottom "normal" figure, I have to be in the upper end of normal on my T4 to not feel hypothyroid.

    I was told then I was depressed, I think all the doctors feel I make this APS thing up too

    I know how I feel, I put myself on baby asprin after getting ocular migraines this year and do feel about 30% better but the fatigue and joint pains and pins and needles do not go away.

    I have now decided to go private to London Bridge, My GP has been excellent and ref me back to Guys to see Proff Khamashta (as I am told he is good with possible seronegatives) but he is going to Dubai on a sabbatical for a year. I have been told that Dr Sanna is very good at looking at ? Seronegative patients.

    I will keep you all posted.

    Hope this helps you to know you are not the only one

    Kind regards

    Sue

  • Hi Sue have you never had your neck xrayed i have these symptoms and it is coming from my neck and spine. I have Fibromyalgia and chronic arthritis and osteoporisis. Many syptoms are the same has lupus. I hope they get you eventually sorted like you my blood tests always come back neg. I have been like this since 1994/95. Shazz

  • Extremely helpful posts from LupusKaren and bathouse. I totally agree with you. Pity there's no "sympathetic Rheumy doctor list" (for seronegativity). Wondered if this is something Lupus UK / or someone would consider starting?

    If nobody would be willing, I would consider starting myself..! (not joking) This is a dangerous disease to live without a proper recognition and early treatments. LupusKaren, I totally get where you are coming from. You are totally right about what you say. 12 years..I would only imagine how difficult it must have been for you..12 years is such a long time for the disease to go on progressing causing both short and long-term damage without the treatment..I'm so so glad for you that you are now recognised to have both conditions at long last!! (so how many Rheumy MDs were WRONG about you in total?) I personally feel that this is so terribly common for the patients to be left without any treatments (let alone diagnosis) for so many years getting worse in their condition..we all have a similar story to tell?..Is it okay to pm you, LupusKaren?

    bathouse, good luck with Prof S at London Bridge...I sincerely hope he would be kind to you. please do let us know :-)

    Lesjames, are you being treated for Lupus / autoimmune anyway? Then you are ok without coca cola added in your urine lol

  • Fern, of course you can PM me, will keep an eye out for you.

  • Thank you so much LupusKaren.

    Will be in touch. Have a very nice day! xox

  • I know how you feel. I have a long list of symptoms like yours. Started with joint pain and fatigue but the list gradually got longer over the years. My blood tests kept coming back negative so I wasn't even referred to a rheumatologist until September last year! First one I saw was a registrar who sent me for more tests. I saw the consultant last month, (after changing my GP to one who is more interested and sympathetic), and he is wonderful. Sat and went through my symptoms and said that 2% of lupus patients never have a positive blood test and I could be in that 2%. Told me I definately have a connective tissue disease but wants to dot the i's and cross the t's to be sure of which one. Is pretty sure it is lupus though. He ordered more tests, some of which I am still waiting for appointments for, and started me on Hydroxychloroquine. Told me this drug can take six months until you notice a difference so my next appointment isn't until November. In the meantime I am to keep seeing my GP and, if he feels it is necessary, he can get in touch with my rheumatologist and arrange an earlier appointment. After 20 years I feel like there is light at the end of the tunnel.

  • GloomyEeyore

    Pleased to hear that you are now on Hydroxychloroquine and have a very helpful GP. I have been told that it might take up to a month before it starts working. Certainly, it shouldn't take six months to work..the effect was immediate in my case though the amount was since reduced since due to Rheumy's concern for retinal toxicity. Good luck with your appointment in Rheumatology. xx

  • Please don't take this the wrong way , but why are you so much in a hurry to be saddle with a label. Do you get treatment for the conditions you have mentions ,

    I had my test back late ninety start of 2000 and was told i didn't have lupus and left it. Got more than enough of the symptom's . Then I was sent up to local AAU department the other day and the F2 who is training at our GP surgery printed off my notes to take up. On there it states in 2000 the blood test i had showed a faint + lupus test.

    I have never had another or been treated for lupus, but dealt with my other health problems individual.

    At the end its only a name.

    Sorry for been blunt or any upset or offence cause to anyone.

    Jeff

  • Jeff

    I think that you missed the whole point there. Nobody is seeking a diagnosis. x

    "dealt with my other health problems individual". May I ask what "other health problems" are if it's okay? So you think you probably have Lupus and you are happy to "deal with other health problems" as they "pop up." That's entirely your choice.

  • Fibromyalgia , Arthritis , Crohns , Colossus , Raynunds , HI tutus hernias, Heart spasms , Unstable Angina , 50% brain damage from stroke. Depression , Part sighted , Tinnitus , Ulcer , exmer underlining emfercemer.

    Pls excuse spelling. can't remember rest.

    It took me to have a major stroke and heart attack then make a formal complaint about the heart consultant, To get my unstable angina diagnose and that i had a heart problem .

    Once the individual part are diagnosed then the lupus Doctor might just take notice of the pieces .

  • Jeff.. Thank you. That sounds horrendous..in what stage are you in terms of the treatment for autoimmune / SLE / whatever else if it's okay to ask this? What you saying does make sense to me but you do realise that ONLY with early diagnosis and prompt treatment, many people won't go through what you went through? hope that makes sense x

  • Totally agree with you. This is why i asked why was it important in the name. I look at it as long as they treat the problem and the cause and NOT just the symptoms as most do nowadays, Then i am reasonable satisfied .

    If you lucky enough to have private medical insurance , then take full use of it and get it diagnosed now as if it runs out and you are diagnose with it then you can't be covered by medical insurance.

    As you can see its one that goes on and can do with a lot of medical investigation and treatment.

    I did think that letting referred to lupus centre would help me but back in 90's it was still very little heard of by the public.

    I think one of the TV soap's helped spreading news about it, but now its more Fibromyalgia the Dr's are diagnosing patients with.

    Try for the jigsaw pieces 1st and go back to the Lupus Dr once you got them in place and treatment on go.

    At least you will be getting some pain relief hopefully while trying to get your diagnosis .

    PS. Had butterfly rash since i was in my teens.

    Your's hopefully

    Jeff

  • I have many symptoms of Lupus I went to see a guy who did blood test they came back negative he pick up I had COPD and asked if I took steroids and then said it was steroids causing all my symptoms even my balance the idiot. One day someone will find out what is causing the problems and I will send him the results with a nasty letter, the same guy has refused to treat a 22 year old with Lupus because he claims she is not taking her wharfrein and she was and every time she has to see him he has her in tears

  • onamission

    I had seen a bad bedside manner of Rheumy..it's totally right to complain..I recently had a bad experience and I was thinking of "just letting it go". Since discussing the matter with the charity, I am now considering to report to the GMC which deal with doctors misbehaving.. it's sad when this sort of thing happens.

    gmc-uk.org/concerns/23339.a...

  • I would rather wait till something shows in my bloods and then wrap them in a house brick and shove them where the sun don't shine this guy has crocodile skin

  • Onamission, I am totally with you here. I have Sero neg Lupus (aka UCTD). I now have intermittent bouts of quite significant weakness. These were blamed on the daily 15mg steroids so I have reduced steadily since July amid increased flares and subsequent weakness. At my recent review, I was congratulated on the reduction and told in the same breath that the bouts of weakness were due to weaning off the pred and now being on a low dose. Grrrr.

  • I have COPD and at the moment I have the flu I started my antibiotics today but I'm not taking my steroids until my breathing gets really bad.

    This has been going on now for 7 years my GP thought I had cancer with all the bruising I was tested for cancer and von- wheel brands and the consultant recommended I see a skin specialist but I was sent to the local idiot so I think one day something will come back in a random blood test then I will go to the brick yard.

  • it works both ways , if they don't do their job how you want them to you can refuse to see them and be seen by other people.

    Don't forget , now you can make a formal complaint over the way they treat you , as well as if you don't feel you have received the right medical treatment.

    then there is a online review , were you leave feed back on the Dr's / consultants and hospitals .

    they no longer have get away with playing god.

  • Hi i have almost all these symptoms .I was tested for lupus like you they came back negative .However i do have Fibromyalgia the symptoms are very similiar. I also have Arthritis and Osteoporisis. Sinus infections Mouth Ulcers weakness ( muscle pain Terrible).Memory problems Medication Problems (Cannot tolerate a lot of them). Asthma.Joint Pain.Long before i was diagnosed with arthritis. I was told in 1995 i had Fibromyalgia and was put on Amitriptyline. So i know how you feel. I use colgate pro sensitive mouth wash for my teeth its works wonders on ulcers for relieving pain from them and appear to heal them quicker . My opinion works for me. Shazz

  • shazz49

    I have seen a commercial autoimmune risk gene screening test you could buy online last time I looked.

    I had one a few years ago, which showed I had multiple risks genes for autoimmune diseases (the main one was Lupus). Blood tests aren't remotely 100% reliable. If it was, why people are purchasing these genetic marker tests or people regularly visit a forum like this? SLE risk genes are quite a few and depending on your ethnicity, these may be entirely different. Because other autoimmune diseases often share these genes, you also get mixed and overlapping symptoms (including thyroid, R.A. other forms of autoimmune diseases). It is known that these different diseases share the similar inflammatory pathways. Hope it helps in some ways.

  • Annalouk, I was googling for a specific symptom share by more diseases than lupus, and I happen to see your post.

    I'm 64 years old and 10 years ago I was in the same position you are in...I had the same symptoms --even the rash on my face and my chest. My physical therapist believed I had an auto immune disease. A coworker who was diagnosed years ago watched my decline and insisted I get tested for lupus. I read up on it and agreed with her. I saw countless specialists, rheumies, internists, neurologists, orthopedic specialists. I always heard the same thing...yes, I had the RA factor, but not "enough" inflammation. My liver went into major failure, but when I recovered, they said, no, it wasn't lupus. The blood work just wasn't "there." Eventually, an ortho surgeon diagnosed me with cervical stenosis, but when my hips started to go, he knew there was something else going on. He referred me back to the very first rheumatologist I saw...he didn't want to see me, but two other doctors endorsed the referral, so he finally took a second and much closer look. The diagnosis: Ehlers-Danlos syndrome plus a likely mast cell disorder (the two often co-occur). And he was right. The rash was caused by some allergy medicine I was taking! But the other symptoms were all explained by EDS. I'd rather have lupus, really. There are treatments for it, and lots of research for a cure. Not the case for EDS. However, there's a certain relief in knowing the why of what's going on.

    In my opinion, you live in the best country in the world for specialists and research in EDS. Perhaps you could find someone to at least eliminate that possibility...you never know--it just might be the problem, and from there, you would start the coping journey and join the worldwide support network on Inspire.

    It's just a suggestion; I recognized the frustration in your post and felt I should share my experience. I wish you well.

  • hi////knew this post is few days gone..i was same for years..i had sharpe shooting pains in my chest from i was 21...not one gp helped..rest is has youve put it...ive low white blood plaltes for 12 years,my hands feet go blue....on maryalar// pills cant spell too...ive had too put work on hold..39 year old mum,,cracking up..thankyou too everyone who texted me.on why is my face getting redder,,,,went my gp other day..she was shocked how worse its got,,,ive been very ill....my rumotolist 4th one ive saw was brill...said ive propible lupus,,,sle/ive 4 levels ddd out in lower back,,,ostroarthirts,,,,my finnngers sweal up....sick me too.......once you get good rumo things get better....i am on loads meds with pain etc,,oh i get shooting pains in elbows....

  • p.s they said i had fribo////but now this contissue disesae thing....

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