blood tests negative- what now???

[heather1983]

I'm feeling upset and very despondent. after 2 1/2 years of on going illness, I honestly thought an autoimmune condition was the answer. 6 months of fighting to see a Rhuematologist, initial consultation went really well (he put me on steroids and said he was fairly confident I had Lupus, but possibly had other conditions along side so wanted to wait for the blood tests before making a firm diagnosis), then yesterday all blood tests came back negative so now off steroids and made to feel like a fraud again!

I did get awarded PIP on Tuesday (standard rate for both), so should at least be pleased that my symptoms and there effects are being taken seriously. I just now feel like there's no hope for the future.

The Rhuematologist did have some suggestions; he says do have Raynauds so can have medication in winter to help with that. He is certain I have carpel tunnel (splints have helped a little), i have a nerve test booked to confirm, so surgery could help with that. I have really bad bunions, GP said couldn't have op until Rhuemey diagnosed underlying condition, the rhuemey now says the bunions could be causing the joint pain in ankles and knees so surgery may be the answer for that too. As for severe abdo pain..... well its back to Gynae (who have discharged me saying nothing they can do- must be rhuematalogical lol). last diagnosis from them was pelvic congestion, small ovarian cysts (simple), and possible adhesion's (although last lap in Aug 2014 showed no adhesions). Only problem now is what about the severe fatigue, brain fog, mouth ulcers, sun sensitivity, headaches, pluretic type pain, and breathlessness???

6 months of battling to see Rhuemey, after GP and other consultants all certain it that all symptoms where due to autoimmune/ autoinflammatory, and now back to square one.

n.b. I asked Rhuemey about seronegative lupus- he said it dosnt exist! I also asked about my low vitamin D levels, he said most people in north of england have low vit D and although theres lots of research papers written about vit D and autoimmune type conditions, he dosnt think theres any conection or even that having a low vit D will cause any symptoms ( he said it just leaves you open to weak bones and in bad cases, rickets).

[heather1983]

forgot to mention, rhuemey also said i had hypermobility and putting tuba grip on knees and ankles will help...... I cant get out of bed some days! cant see tuba grip making that much difference lol

[cuttysark]

Hi Heather

I fought this same battle with negative blood tests for virtually forty years .I am now early sixties and my symptoms worsened considerably in the last ten years but the bloods stubbornly remain negative.

For me the only answer was in finding a Rheumatologist who will think out of the box and consider seronegativity.

Thankfully I found one, and steroids brought some life back for me , though my symptoms are gradually increasing and they want to start Mycophenolate now.

Unfortunately I am really drug sensitive ,so things like Hydroxychloroquine didn't suit me.

It is a battle to be heard ,but if you have a good GP on your side that helps a lot.

Don't know which part of the country you live in, but maybe through the forum you could find out if there is a good consultant near your area.

It is one of the most upsetting places to be, but keep fighting and you will get there in the end.

All the very best, C xx

[heather1983 in reply to cuttysark]

Thanks for your reply. I saw Professor Bruce at Manchester Royal Infirmary. He was recommended to me. I asked him about seronegative Lupus and he point blank said it didnt exist and shot me down everytime I asked to remain on steroids or try hydroxychoroquine. who is it that you see? I dont mind traveling or paying.

[cuttysark in reply to heather1983]

I am up in Scotland Heather and there may be someone nearer you but will send you a pm later today telling you more about how I got to my consultant. X

[heather1983 in reply to cuttysark]

Thanks x

[Queencara78]

Hi Heather, I just wondered if you have any lesion type rashes? I have one on my leg and just had a biopsy because my Dermatologist believes that I have Mixed Connective Tissue Disease. I also have all the same symptoms as yourself, Secondary Raynaud's, Carpal Tunnel, and sun sensitivity which can cause swelling of my cheeks and nose and butterfly rash. I do know that for some reason with bloods you have to be actually having a flare at the time the bloods are taken for a positive result, so may be worth instigating the flare the day before next bloods are taken. I haven't tried this myself because I know that my biopsy will prove whatever condition(s) I have, but I have read a post from a lupus sufferer that tried it with positive blood results.

Cara x

[achydunlin]

I think I posted before a while ago - I saw an immunologist many years ago after I had severe hives, fatigue, aching, butterfly rash etc which resulted in a trip to A&E. The immunologist did a ton of tests and said at the time that I was allergic to everything under the sun but, although at the time my ANA was negative it could easily "next week" be positive. He said - in fact his words have burned into my mind as I've gone up and down with 'something' over the last ten years - that lupus is notoriously difficult to pin down with just a blood test - false negatives abound and he said it was sometimes just 'lucky' if you got a positive one - i.e. right in the middle of a flare...

It's a shame rheumatologists don't think outside the box more.

[heather1983]

fortunately/ unfortunately (lol) I do not get lesions so dont have dermatological input.

I have been back to my GP today who said that she still feels that it is an autommune type condition, and was shocked that rhuemy had been so dismissive. I am currently waiting for the actualy blood results to be sent to the GP so she can re refer me to someone that acknowledges seronegative conditions, or atleast will be willing to treat the symptoms.

If anyone has been diagnosed without possitive bloods, i would be grateful if you could message me with the details of who they saw (I am willing to go private).

[cuttysark in reply to heather1983]

Heather I had the same attitude shown to me by my first lot.

They were all over me so warm and smiling and telling me it would get sorted out soon and then it was as if I had committed some kind of crime the next visit by having negative bloods.

In fact I was dismissed in five minutes and told fibromyalgia, ask your GP!!!!!

[heather1983 in reply to cuttysark]

That's exactly what it was like 'like I'd committed some sort of crime'!

I had a lung function test on Tuesday, but rhuematology said results wernt in when I went yesterday. I called the breathing clinic this afternoon to see how I would get the results now, and was told the report had been written yesterday ready for rhuematology but they hadn't asked for it! The lady said only rhuematology can access report as they were the ones that requested the test, but not seeing rhuematology till novemember now. I'm sure it won't say my lungs are fine coz the lady kept saying I hadn't breathed enough in even though I couldn't do anymore. Looks like I'm going to have to battle to get the rest of the results now too. I just don't understand why he asked for all these tests if he is just going to dismiss everything coz blood test negative?

[Hidden]

Hi...tests and labels will not lessen the hardship of having to cope with any of the auto immune conditions you have developed, your symptoms are the best indicators for you and your consultant (who does seem to think it is Lupus related). Your health may end up being full of twists and turns so you just need to be strong/tolerant/patient and have belief in yourself. I would comment that it is easy to feel a 'fraud' (I have done in the past) but you most certainly are not but you are 'unique' to have such a complicated illness like Lupus....take care for now...

[heather1983 in reply to Hidden]

Thanks for that.

I think the thing that has shocked me most is how compassionate and understanding he was at the first appointment, and then how cold and dismissive he was as soon as blood results came back. the steroids havn't magically fixed me, but they have made me feel the best i've felt for months and months. now i'm back in limbo. At least the GP is on my side. I'm not bothered about having a firm diagnosis, would just like something other than painkillers so my symptoms can be treated rather than masked.

[adrian_holland]

Oooops sounds like you are pounding a familiar beat, only difference is I didn't get PiP.

[Whathappned]

Hi. Just wondering if he gave you another appointment or referred you to orthopaedic team?

Don't give up it took over a year to get to my rheumatologist. The first I saw said it wasn't something she could help with. The second was brill but wasn't convinced it was his speciality (CFS and infectious diseases) and referred me to the Freeman (Newcastle).

I felt a right fraud after the first consultant as I thought she would of said CFS at least. It was the GP who kept trying and suggested the second consultant, who was brill.

Luckily you have your GP behind you, as I did, so don't give up hope and your not a fraud.

Having a diagnosis can take years, I still don't have anything other than a list of symptoms and possible diagnosis.

Good luck!

[heather1983]

Thanks for your reply 'whathappened', I knew it wasn't going to be easy, and didn't expect to get a diagnosis straight away. I'm just do upset that he's taken away steroids when they were helping, and not even bothering to wait for the other 5 tests he ordered to come back.

He said to tell gp to send me to orthopaedics, but gp refuses as is still convinced it is autoimmune related

[amandajane76]

Its a grim process.i ve been going through it for 14 years and its only by chance I saw a diff rheumy few weeks ago who seems to have a plan and hopefully I may get some firm answers.keep ya chin up xxx

[misty14]

Hi Heather

Sorry to read of your health and diagnosis struggles. It's a long hard road but you will get there. It's spalling how we can be treated by these Consultants and it is a huge shock to see their quick change of attitude. Hang on to the fact that steroids worked which means you do have inflammation. Carpal tunnel proves it too. It's great your GP is on side that's worth a lot!. Could you ask him about a short course of steroids when symptoms very bad?. Also you could get another referral to a Rheumy thru him. You need one willing to treat symptoms without the back up of bloods. Not easy to find, I've had similar problems for 28 years so know what your going thru!. Hope I've helped , good luck with it all, keep us posted.X

[GloomyEeyore]

My bloods are negative but my rheumatologist said that 2% of lupus patients never have it show in their blood and I could be one of that 2%. Hasn't given me a positive diagnosis of lupus yet as he wants to rule out other things. I do have lesions on my legs that have been there for nearly 18 months. I was seeing a dermatologists but he never suggested or did a single test. Kept saying it was my mind causing them and that I should see a psychiatrist! Discharged me back in July, (without telling me, I only found out through my GP!), as he didn't know what was wrong so couldn't do any more. Thankfully I now have a real good rheumy and also, after changing, a wonderful GP. Rheumatologist started me on Hydroxychloroquine after hearing my symptoms improve on steroids, both oral and injections. Doesn't want me on steroids long term as they bring their own problems.

Hang in there and, if needs be, ask to be seen by another rheumatologist. You are entitled to a second opinion. Make sure you tell them about the previous ones attitude. I started my first consultation with my rheumatologist by telling him about the awful experience I had had with the consultant in general medicine. He didn't even examine me but instead accused me of self harm! I think it was his report in my file that followed me to dermatolgy and made the dermatologist I saw unable to think for himself. Keep a diary of your symptoms and take photos where possible. Having photos of rashes can be useful if it isn't there when you go to your appointment. The symptom diary is useful because with brain fog it is easy to forget something that could be important. If you feel you may forget something that is said to you then take someone with you when you go to your appointment. You are entitled to have someone there with you.