LUPUS UK
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Lupus symptoms but negative results

Hiya.

Just wondering how many people have lupus symptoms, have not enough positive blood results and just been told you have Fibromalgia?

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Hi, Iv read somewhere recently that you can have lupus symptoms and it can take from 10 months to 7 years for the and to turn positive.  I think my granddaughter is in this position too.  Not the nicest of situations to be in and it seems just a case of hanging on till they do.

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I have and have been fighting different diagnoses for 5 years. I have every symptom including butterfly rash and other rashes but none of my blood test say anything specific. Some say fibro and some lupus and but am documented as having undifferentiated connective tissue disease. It's beyond frustrating. But thankfully am at least getting treatment for it. 

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What medication are you taking at the moment? And what is that for?

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I am on azathiprin, predizone and plaquinel. They tried me on methotrexate but it was no help. And I am on pain medication also. 

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I don't know what you mean by not 'enough' positive blood tests. The blood tests run for Lupus are: (these are more specific for Lupus).....ANA, (most Dr's are not aware that about 2% of people will show a negative ANA, BUT STILL HAVE LUPUS!), anti-DSDNA, (3 tests are used to determine the ant-DSDNA....Elisa,the Crithidia luciliae immunofluorescence test, and a test called radioi mmunoassay. The anti Smith antibody and anti UR1NP and the Anti-Ro/SSA and Anti-La/SSB  are antibodies found mostly in people with systemic lupus. WHEN I AM IN DOUBT AND THE PATIENT SHOWS MULTIPLE SYMPTOMS OF LUPUS, I RUN THEM ALL!!!!! Lupus is difficult to diagnosis and more of a "bitch" for patients to live with, especially when undiagnosed......I TAKE NO CHANCES.  Many of my colleagues claim I over test, but I have diagnosed MANY patients that have suffered with Lupus that went undiagnosed for years. My sole role as a a Dr. is to diagnose AND TREAT!  I don't want my patients to suffer needlessly, so I will do as many tests as necessary until I find out what is wrong with them. Pardon my language, but the insurance companies can go screw themselves...........MY PATIENTS COME 1st!  I hope I have been some help to you and maybe you can show this list of blood tests to do to your Dr (hopefully she/he won't be offended).........hopefully they will be willing to perform them in order to get a diagnosis for you.

Good Luck,

Dr. S.  (in the USA)

P.S.  If I can be of a further assistance, please don't hesitate to email me.

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You are my hero. I really miss a great and caring doctor like you here...

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Thank you, but I wish I could do more for you.

Good luck to you.

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Thank you so much VaderViper!

If you know a good doctor like yourself in The Netherlands (I live in Amsterdam) or in Belgium please let me know.

You can read my struggles with my deteriorating health and not helpful doctors at my profile page.

Thanks in advance.

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Hi Leanne

Yes I too have Lupus symptoms but have been diagnosed with Fibromyalgia after having I batch of blood tests done. I had various musculoskeletal symptoms for over 20 years but many other symptoms of Lupus for less years and I've never been able to get an reason for the symptoms and I'm not happy because Fibromyalgia doesn't cover everything.

My hair is falling out, my scalp has peeling scales all over it and none of the prescription lotions do anything. I've got round circles of red skin condition on my legs and hips and its not ring worm. I have stabbing kidney pain on left side and no one investigates it. I have nausea and dizzy spells, and I had Papilloedema (bulging optic nerves) which have recently cured themselves. I have numbness and weakness in hands, legs and severe plantar fasciitis for 2 years which isn't rectifying with cortisone injections. I have memory and concentration problems and serious fatigue. I also have legs that swell with some vein problem. I also have abdomen pain and swelling which was diagnosed as IBS, but I don't believe its IBS because when I have a flare up, it goes on for 3 or 4 weeks and doesn't alleviate with any IBS medication. I have stiffness and tearing joint pain and although I am Rheumatoid factor positive, there is no sign of RA on a scan.

I recommend you go back and hound the GP for another Rheumatologist appointment because I've been suffering since my teens, but only started getting people to listen to me, and get test after over 20 years 😢 x

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Defo going back to the Drs tomorrow morning, can't live my life like this, espically only being 21.. I also get the round circles I just thought I had a skin infection but no creams are working for me, also getting lymph nodes in groin.

X

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Claire............i just read your complaints.....please ask your Dr. to do a lip biopsy for Sjogren's Syndrome.

Dr. S. (in the USA)

P.S.  Pappiloedema should always be checked out....there is ALWAYS a cause.  If you ever get it again be sure to be checked out by an Ophthalmologist or Neuro-Ophthalmologist. Do you by any chance have sleep apnea (a sometimes overlooked cause)? People with sleep apnea on a CPAP machine are 100% more likely to get pappiloedema.

Dr. S.

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Hi Dr S

Thanks for your advice. I did think I had Sjogrens because I have dry eye and have been given synthetic tear drops and the doctor also gave me pastiles to make my mouth produce more saliva because I'm waking up in the middle of the night and my mouth, tongue and throat are bone dry. I saw the Rheumatologist once and she put litmus paper in my eyes for 5 minutes but said there was adequate tears but I'm not convinced. I will mention the lip biopsy and see if they will do it. It may be that but I see what you mean about sleep apnea because this might be causing the bone dry mouth and throat, I also suffer from mouth ulcers and I'm wondering whether its because I don't have enough saliva. I can not go for more then 7 days ever, without getting mouth ulcers, as soon as a crop of them go, around a week later, I just end up with more, its been going on for many years. It's definitely nothing to do with cleaning teeth because the dentist always says my brushing is outstandingly good, and I also brush 3 times per day.

I wonder if there are sleep clinics here because I think something is going on when I'm asleep because I do gasp and wake up,but feels like if my neck is not straight, I choke. It might be causing my nose bleeds also, though they aren't so often now, they used to be every day.

I was told by theNeurologist that he could see Papilloedema in both eyes and sent me for a head MRI but all was ok, apart from I have Cerebellar Tonsilar Ectopia (I think its Chari 1) but nothing that needs doing anything about. I knew I had that 16 years ago but it hasn't got worse. He's sent me to Opthalmology and had scans of the eyes and pupils dilated but they said the optic nerves are ok now so its a bit weird. I think it could be the tonsil think that caused it maybe, and now after 3 months the headaches are subsiding with Propranolol. Bit strange taking a blood pressure medication, when my blood pressure is excellent and normally 102/65 before I went on the tablets but hey, its working so its ok.

Thanks again for your message.

Best Wishes, Claire

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Let me start from the bottom up.  If you take propranolol and it helps, it is more than probable you are getting migraine or migraine-like headaches. Although the med is used for hypertension, it has been found it helps prevent your type of headaches (I won't go into the physiology here). Papilloedema is sometimes caused by pseudo tumor cerebi, that is one of the reasons an MRI was done on your brain, which would also show other potential causes, such as Chiari, tumors, such as medullo blastoma......there are many other causes of papilloedema, I am sure they ruled them out. I'm glad you saw an ophthalmogist because glaucoma can cause the problem, so we know he ruled that out.  I know he did a Shirmer tear test, but did he do a TBT.......tear breakup time?  There are many layers to tears and sometimes you don't have the components and get a bad TBT.

You complain of symptoms that lead me to believe you MAY have Sjogrens.......dry eyes, extreme mouth dryness and ulcers. The eye problems are not difficult to help. Your eye Dr. can prescribe "Restasis", a prescription med to force the tear glands to produce more more (even in severe cases). It is actually a cyclosporin emulsion. The mouth can be a little more difficult, I have used Biotene mouthwash 3-4 times a day and find that cinnamon lozenges can cause the salivary glands to produce more saliva (prefer those sweetened without sugar), the stronger the cinnamon the more impact it has on the salivary glands.

That fact that you wake up with a severe dry mouth could indicate that you are a mouth breather (rather than nose). Also, gasping for air and waking up is another possible sign of sleep apnea. I think you should have a sleep apnea test performed by a Neurologist or Pulmonologist. If you do have sleep apnea, it can cause a multitude of problems.........so please rule it out. BTW:  it is easily remediated by a CPAP or BIPAP machine.

Hope I have helped.

Dr. S  (in the USA)

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Hi Dr S

Thank you for all the explanations, it has helped.

I definitely will try the cinnamon lozenges to see if they help, I'm not keen on the ones I've got, they taste like citrus. They might help with the tongue problem too, I have sore circle patches on the tongue and citrus fruit makes them worse.

I dont think they did a TBT as I think they would of told me. She just took the paper out of my eyes and said "that looks like enough tears". 

I will go and speak to GP about getting a referral to sleep apnea clinic to check and also about the lip biopsy too.

Thanks again

Claire

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You are quite welcome. I am sure someone suggested sour lemon drops as they can stimulate the salivary glands. I have found that strong cinnamon drops gives a little better temporary relief.

Good luck.

Dr. S

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Hi Leanne21bull,

Fibromyalgia does share a number of symptoms with lupus and can therefore be used as an alternative diagnosis in some cases when there are negative blood test results. Sometimes lupus can present with negative blood test results, this is usually called seronegative lupus. Other times cases like this may be diagnosed as undifferentiated connective tissue disease (UCTD) which is usually treated in the same way as lupus. 

If you are unhappy with your current diagnosis and treatment plan, you could ask your GP for a second opinion. It may be worth asking for a referral to a consultant who specialises in lupus for this. If you let me know whereabouts you live, I would be happy to provide you with information about any specialists near to you.

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Yes I had this for many years - got treated for a range of things, allergies, arthritis etc. But if you have a high ANA and low connective tissue blood test then that can indicate Lupus. Along with the obvious flare symptoms. It took 8 years and lots of blood tests and specialist intervention to finally get diagnosed 2 months ago with me.

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