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LUpus Patients Understanding and Support
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All bloods negative

I'm looking for some advice/support. For about 3 years, I have been suffering with fatigue, muscle weakness, joint pains. Over the last year I have developed a malar rash that comes and goes, triggered by sun or heat, I also have rashes on my hands after I've been in the sun and my legs swell up too. My hair goes through periods of thinning and I've lost half of my eyebrows. I also have raynauds symptoms amongst many other changes. Initially my Ana was mildly positive but since has been negative, as have all the other many tests . I'm completely baffled and frustrated at my illness and none of the various"specialists" will help me as my labs are all normal. What can I do now. I'm desperate for help!

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Hi. I'm sorry to hear that you've been going through so much. I have a long history of lupus but have no antibodies to support this so don't give up! You mention that you have lost half your eyebrows and I immediately thought 'thyroid' as I believe outer eyebrow loss is a feature of under-active thyroid. I'm not a thyroid sufferer myself so I don't know very much but there is a very good forum on HU. Have you had your Vit D and B12 investigated thoroughly too? These may seem trivial things but addressing any imbalance can be life-changing. Have you been referred to rheumatology? You should keep a symptom diary with photos etc - there lots of overlap conditions with auto-immune diseases so we don't all fit into convenient boxes but it can be a battle initially to work out where the problems originate Xxx

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Thank you, yes I've had my thyroid checked and it came back normal. I'm sure from my research that I've basically been tested for everything including all vitamins etc. I'm sure doctors think I'm making it up, I do keep a diary and take photos of visible symptoms, but no one is interested anymore.

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It's very disheartening but you mustnt give up. I believe there are other, less commonly used thyroid and b12 tests that can be done for those with unexplained symptoms but you would need those other forums for experiences advice. Do you have any inflammatory markets at all? Xx

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And yes I've seen 2 different rhumies buy same response as my bloods are normal

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Then how about asking for a referral to one of the top NHS rheumatologists?

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If I were me I would do some research about Rheumys or Hospitals that have specialist Lupus departments. Seeing a Dr who sees Lupus patients daily would be much better as they won't go just by antibodies. What's your ANA doing or ESR for instance, general markers that often give clues. Also have they checked complement to see if that's low? Platelets also would need to be checked as in Lupus they can fall. Whilst your symptoms are quite familiar with Lupus, do they are with other autoimmune conditions.

You say your Thyroid has been checked but was that just TSH? If so that's no good you need a full panel with antibodies. Also VitD, B12 and Ferritin as any of these can give you symptoms.

I think it's imperitive that you get to the bottom of it especially as it's obviously affecting your quality of life, but more because Lupus and other autoimmune diseases are very treatable so you don't need to suffer. I don't know where you are situated or if you can afford to see a private Dr but there are specialist Hospitals in London you may want to check out.

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Thank you for your replies. I have had full thyroid panel done. Inflammatory markers are slightly raised but nothing that concerns anyone. I have had 2 rhumy referrals, 1 endo, and spinal specialist referral (as I have arthritis in my neck and 3cm "cysts/ dual ectasia" at thoracic level), so my gp is reluctant do any more referrals as they cost NHS money, I can't afford to go private either, hence I am feeling so lost. Rhumies would not even consider ana negative lupus as they said this small % would have anti ro / sm markers which I don't have.

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And I've also had gastro referral because of heartburn and bloating but they were not concerned about that, only that I have colitis (which has been in remission for 6 years), and they wanted to give me meds for the colitis but I said no, I mean why would I want medication for something that isn't affecting me when there's so much that is! Sorry for rant but I'm losing faith in these people!

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Three years is a long time to be having such awful symptoms as fatigue and pain without a diagnosis. I know how discouraged you must feel and with little hope without a diagnosis. Like you, I had what doctors described as "vague" symptoms of fatigue, light-headedness and muscle aching for years before diagnosis of autoimmune disease. I think now I have a better understanding of what doctors, particularly rheumatologists, face when called upon to make a complicated diagnosis. I respectfully disagree with some of the members' sense that it is from lack of knowledge of lupus or failure to do the appropriate tests. That may happen, but I do not hear that in your history. Autoimmune diseases co-exist with other autoimmune problems as with thyroid problems. It seems your doctors are testing for all possible links and clues. I think the huge problem you are facing is the lack of specificity of your symptoms. That is not the same at all as not having symptoms. You may, indeed, have lupus or another autoimmune disorder but it is not diagnosable at this time. These illnesses evolve. Because lupus is considered a serious illness with a big impact on someone's life, the diagnosis is limited to a particular set of lab evidence and specific signs. I still have a diagnosis of undifferentiated connective tissue even though I meet the four out of eleven criteria. That shows you how complicated it gets. This may not be the answer you are looking for, but I do believe what you need now is an excellent internist who will truly communicate with you and is willing to support you through this struggle. Continuity is important. Do keep records and keep taking photos. Record any low-grade fevers that occur with symptoms. I would recommend a dermatology consult because of your hair loss, rashes and sun sensitivity. They can be very helpful in diagnosing autoimmune disease. Try to get in when you have the rash so that they can biopsy if necessary. I am sorry you have to go through this process. It is awful not knowing what is causing you to feel so sick. I do believe your illness will express itself so that a diagnosis can be made. Until then, know that many of us truly empathize with your struggle.

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I am sorry for not replying sooner, but I spent yesterday travelling and am now trying to catch up.

3 years is a long time, but sadly this is not uncommon. Your feeling of disbelief is also common and your sense of being disbelieved is all too common.

Unfortunately, it seems that the doctors whom you have seen have not been reassuring ie to explain that first, you are clearly unwell and while it is the aim in getting a diagnosis, this may take time. I have to tell you that I saw 6 rheumatologists and ready to give up but I was persuaded to see Dr Graham Hughes at St Thomas' Hospital, London. It was because I am "sero-negative" that it took him, probably THE foremost authority on SLE, that it took him 18 months to diagnose me formerly. However, he said that he believed "we can do better" in treating your symptoms, and he did.

I am not making any diagnosis and whether you have lupus or another autoimmune condition, can only be determined by a specialist. Not all rheumatologists are specialists, which is why I recommend getting a referral to see on the NHS, Dr David D'Cruz at the St Thomas' Lupus Clinic, London. I don't know where you live, but they see patients from all over the UK. You cannot be expected to put up with being ill because your GP is worried about expenses! That comment is to make you feel guilty and for you to go away. You are worth more than your GP's expense account.

Malar rashes are actually uncommon. Rashes can look alike and only a biopsy with determine if it is a malar rash, or one of many rashes from the sun or photosensitivity to UV rays. A dermatologist would be helpful if you could see him/her when you have the rash.

You mentioned colitis but refused treatment. Why? Lupus can and does affect the bowel and treatment may also relieve the other symptoms. I also have inflammation in the bowel, related to SLE and therefore there is a possibility this is related. Some people have both bowel and joint problems, so I would urge you to reconsider the possibility that this maybe helpful.

If you live far from London, you can stay for free at The Simon, overnight, on the NHS, but if someone accompanies you, they will have to pay a nominal sum. The hospital will give you the information if you speak with them.

We have another website which has a great deal more information, should be interested, called the LuPUS Message Board.

I understand how frustrating this can be, as well as causing much anxiety and distress, but we are here to help support you.

With good wishes,

Ros

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Thank you so much for your advice. The rheumatologists and doctors are saying that I can't have something like lupus because my bloods are normal and that I should be reassured by my results, but I feel strongly that it must be something like lupus because nothing else fits all of my symptoms. They have given suggestions of fibromyalgia and CFS which frustrates me even more because I don't have any of the typical symptoms of fibromyalgia and I have much more going on than can be explained by either of these things, they obviously have no idea what is going on with me and this contributes to my lack of trust in the people I've seen. I will certainly look into the specialists you have recommended because I know my own body and know there's something very wrong, but I do not want to wait until something evolves that is irreparable. As for my colitis, although I have considered that it may be related, this began 16 years ago but currently I do not have any symptoms, I manage it myself with no meds and feel that interfering with something that is currently working fine, is asking for trouble and frankly anything extra on top of how I already feel, could just about push me over the edge, so that is why I refused treatment (if it ain't broke, don't fix it).

I asked the spinal specialist what can cause my spinal problems and he said it can be caused by connective tissue disease so now I'm also wondering if this is related too. Surely all these changes in body are connected, it can't just all be coincidence can it? I sometimes am made to feel crazy for thinking that but I literally have a double sided page of symptoms/ changes that have happened over the past few years, I have tried to ignore what's happening to me and just muddle on but this illness is progressing and my physical and emotional strength is weakening, hence me reaching out to you guys. Thank you again for your support, just to be listened to is a massive help!

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It is NOT true that if you have "normal bloods" there is nothing wrong! Prof Graham RV Hughes would disagree. What they seem to be saying is: "we can't find anything - so there is no problem!"

There is a paper you may like to read: Is it lupus? The St Thomas' 'Alternative Criteria' written by Dr Graham RV Hughes

lupus-support.org/LuPUSMB/i...

This refers to the "Classification" criteria doctors insist on using ie the 4 out of 11! However, this was designed for CLASSIFICATION ie to get the same kind of patients used in clinical studies. It was NOT designed to diagnose individual patients!

Get the referral!

Please feel you can talk about this as much as you need.

You may need to Register to read the paper - any problems, just send me your details and I will validate your account: roz@lupus-support.org.uk

With good wishes,

Ros

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Update: Went to see my G.P. again to ask for the referral, she said it's highly unlikely they will fund the referral to St. Thomas Lupus clinic, but she would ask anyway. I also asked if I could see a dermatologist to identify my rashes but she said not if the rhumies don't think it's lupus. She could not recommend what to do next or any further tests so all in all, I am at a dead end, I guess I'll just have to wait for this disease (whatever it may be) to progress, and just live with it. : (

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