Blood tests came back negative, so rhuematologist now not interested!

I was refered to Rheumatology for an autoimmune /autoinflammatory condition.

My sypmtoms are as follows; joint pain and swelling, severe fatigue, abdominal pain, breathlessness, pluretic type pain, tingling and numbness (mainly hands and feet), cold/blue feet, nasal and oral ulcers, vaginal ulcers, ovarian cysts, migranines, photosensitivity, nausea........

I had an incident 2 1/2 years ago where i was in hospital with severe abdo pain for 2 weeks, all tests came back normal, eventualy taken to theratre for exploratory surgery and found imflamation / infection in abdominal cavity (even though all blood tests and swabs had been negative and I had been on IV antibiotics for 2 weeks). I also have symptoms of UTI's and PID but all tests come back negative and antibiotics make no difference.

GP had done numerous blood tests looking for signs of imflamation but always negative. because of this the GP's referal was sugesting they look for a possible seronegative diagnosis

I had second appointment with Rhuemy on wednesday. as all blood tests where negative he says he can not treat me. I mentioned seronegative and said I havnt even had all the tests hes asked for yet (nerve test, echo, abdo ultrasound, lung function), but just kept on saying that the bloods are negative and i didnt have lupus.

after first appointment he put me on 10mg prednisolne per day. This helped with fatigue and joint pain, but im not allowed it anymore coz blood tests are negative. I have been in severe pain and suffered with crippling fatigue for years, and just when I thought I was finaly being treated with something that was helping, it gets taken away coz bloods where neg!

I didnt go to see him to see if I had lupus, I went to find out what was wrong with me! how can he make a diagnosis when I havnt even had the majority of the tests he ordered????

Sorry for rant....... the main reason for posting this is to ask if behcet's was diagnosed purley using blood results. I've looked on the internet, and cant find much about it. He mentioned Behcets at first consultation, along with other things like raynauds, scholoderma, sjorgens...... but then at second appointment just kept taking about me not having lupus and no mention of the posibility of me having anything else (he said he will treat raynauds in winter).

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  • Hi so sorry for all your problems and don't apologise for ranting....we all do it!!,

    The main problem is all autoimmune diseases are similar and can get crossover results and take many years to get to diagnosis.

    As for Behcets there is no standard tests blood or otherwise. A diagnosis is reached by a criteria of symptoms, length of flare, times of remission etc etc. the average time for even a partial diagnosis is about 12 years and even then there are doctors who disagree. You need to get you GP on side and keep a diary of all symptoms, how they affect you and your feelings and lethargy also take photos of every ulcer, rash and spots. Always take this with you when you see a consultant and if possible take somebody along with you to remind you what to ask and to understand what the docs are saying. This applies to whatever may be wrong with you and how it is interfering with your life and work.

    That's really the best advice I can give and I do wish you well and hope you find some answers. Try to stay positive and strong and do get rest and not worry too much as all these help stave off a flare.

    Hugs

    Billi

  • Frustrating ! Maybe if all your symptoms have been recorded over the years with your GP , you could ask him/her to refer you to the london behcet clinic for an assessment ? Your GP can do that, in his reference he/she need to list all your symptoms - it is good that it isn't lupus cause it take it out of the equation and makes behcet even more a potential - especially with the list of your symptoms ! My gp wasn't to keen in making the reference, he thought it would be turned down being from another county and how the NHS system works , but he still did it and I now have an appt with behcet specialists in London . I hope this work for you too. X

  • I totally understand your problem. My daughter who is 12 is currently on the diagnosis trail. She' had all the symptoms you reference above but all bloods are coming back normal. The one thing that is consistently there is blood in her urine which I believe indicates inflammation. I am actually in the children's hospital with her since last night as the pain was too much for her to bear and I think I will pretty much refuse to go home until they get to the bot to of it. She's been like this for over 11 weeks now and although she has an appt in 2 weeks with rheumy team I can't wait any longer, neither can she. I have Autoimmune Hepatitis myself so I know the road is a long one. I had cirrhosis before anyone listened to my mother! And my little one already has 2 AI diseases coeliac and hypothyroid. Poor pet ­čś× unfortunately I am in Ireland otherwise I would be straight to one of those clinics!

  • Sorry to hear this.

    I was diagnosed with BD. My worst symptoms are reitnal vasculitis and uveitis ( on top of ulcerations, fatigue, etc). Even on my worst days, when the vision is barely there, my blood tests were negative.

    Perhaps it is time to find another rhe umy?

  • Blimey. I'm so sorry to hear what a frustrating time you're having.

    In my experience, many consultants are way too hung up on blood results. At no point in my own Beh├žets journey have I had any inflammatory markers raised in my bloods and even at times of crippling arthritis with the worst swelling and inflammation, ulceration, etc have my CRP levels been raised. The only time I have abnormal blood results is when my liver plays up.

    I was in hospital this week actually... A very personable Professor did his rounds and said 'is it worth us doing any bloods or are you one of those who's bloods don't show anything?'. I was a bit stunned and remarked on his knowledge and his attitude was probably the most sensible I have encountered so far.

    I'm sorry your Rheumy is seemingly so blinkered right now. Mine is pretty bad and I have to take charge of the situation... But I understand not everyone feels able to do that.

    There is great advice in the other answers, above. I wonder whether your GP would be willing to initiate a direct referral to one of the Centres of Excellence. I know that the NHS's own website has a far more accurate description of Beh├žets since it was updated last year - I was impressed to see it.

    Good luck and let us know how things go!

    Will :)

  • I echo what the others have said about asking your GP for a referral to a Centre of Excellence. If it turns out that you don't have Beh├žets they will help you towards a diagnosis. Meanwhile, start keeping a symptom diary and take photos of any ulcers or skin lesions you get. Good luck!

  • PS, my bloods have always been clear, apart from the one time I managed to struggle to the GP at the height of a very long flare up. My inflammatory markers were very slightly elevated then.

  • The only time blood results ae bad is when I have atypical meningitis. Then the only thing that is elevated is the SED rate which indicates inflammation. However, it is only minutely elevated, not enough to cause alarm. In fact when I had atypical meningitis in March the ER doctor sent me home. He said my labs were normal except for my SED rate but that even that was nothing significant. He offered to do a spinal tap but I could tell he didn't want to so I just went home. Two days later I was admitted. Anyway, my labs are always normal except my sodium levels and then I just get an infusion.

  • Usually tests for a specific disease can be negative but generalised tests that show inflammatory markers are positive during flare up of any autoimmune type condition. I always showed raised enzymes and 3 or 4 inflammation markers but Behcets patients are a mystery because the reason why is not clear and raised ESR and CRP etc is common with any illness, even a bad cold virus. However, if a Rheumatologist finds nothing it isn't because he does not believe you but that his training will not permit him to treat where he finds no indications whatsoever because side effects from things like Prednisone can be serious and have long term effects so risks have to be outweighed by your illness and if he finds no indication of inflammation he is assuming no further treatment is safest for the moment. He may expect this to change but may wait until you are referred again with positive indication. I was on and off steroids for years and usually you get short periods of higher doses tailed off to smaller maintenance dose and they would prefer to get you on nothing. Steroids make everyone feel better whatever the disease, even terminal stage cancer or someone who has nothing wrong at all. So getting better on them never proves scientifically that a specific disease is present. And Steroids can aggravate or bring on Diabetes change blood pressure make you gain unhealthy weight and affect adrenals or pituitary and are not ideal. Coming off is difficult too and can cause withdrawal crises.

    Behcets is something considered after every other option was explored first including the option of an unidentified combo of conditions that came and went. I first got eye diseases in 1996 pancreatitis in 1997 but did not get a presumed Behcets diagnosis until 2003. And even now, 18 yrs on, many of my ailments are discounted as not part of the Behcets or are thought of as peculiar to me. Docs accept mouth ulcers are part of Behcets but tell me my nasal ulcers and rhinitis is not.

    It is easy to take things personally and think nobody is prepared to listen. However I don't think your doc says he does not believe you but just that he cannot warrant giving anti inflammation meds with serious side effects to patients whose blood tests do not positively show active inflammation. However those markers can change and so can docs opinions so go on reporting what is happening. Keep a symptom diary and keep asking for help. Don't expect a unifying diagnosis to come easily though and if/when it does come,you might still find docs dismissive of symptoms that they consider not part of the main diagnosis. I used to think getting a diagnosis would cure my problems, (especially as at one point a friend was accused of causing my ulcers by deliberately burning me) but when I was finally diagnosed (and my friend was never apologised to for getting awful things written on his records regarding accusations of assaulting/harming me) not a lot changed and my meds are more or less the same as before diagnosis and each new ailment still gets me the run around. For years getting a diagnosis was a goal but I had unite Alistair expectations of how it would solve medical problems.

  • Erssie- Thanks for your reply. I'm not concerned about having a diagnosis, just treatment for my symptoms. I take tramadol, naproxen, dihydacodeine, and 10mg butrans patch for pain...... yet im still in pain and unable to function. the steroids where given as a trial and if they helped I was going to be given a trial of hydroxychoroquine, I didnt want the steriods in the first place, just the hydroxy..... As I understand this has limited side effects (apart from eyes so annual checks are required). I was hoping, that as the steroid significantly improved my simptoms and I was able to greatly reduce opiates and leave the house, i could try the hydoxy...... Unfortunatly this was not the case so Im back to popping pills every few hours and lying on the sofa in pain.

  • I was on very high doses of morphine etc and found I could not get on with NSAIDs due to gastric problems.

    However, due to bowel obstruction had no option to reduce the opiates and other medication. A lot of my pain was due to neuropathic causes and apparently opiates are not good for nerve pain. My pain was so sharp and electrical I was hyperventilating and making odd gulping noises and it made me wet myself. Gabapentin was suggested and had horrid side effects. Eventually I was put on pregabalin which everybody said was going to be the same as Gabapentin but more expensive so GPS prefer Gabapentin, however it was totally different and very effective with me and I have been on it ever since. the other thing that helps is for me to be on a lower dose fentanyl patch and no morphine whatsoever. morphine can actually cause pain in the gut and pelvic area because it puts sphincter muscles into spasm and it does not help with pelvic pain if you get constipation in the colon as a result of opiates.

    in addition to pregabalin and fentanyl I visited a herbal Medical Practice and was prescribed medical cannabis which I take in the form of concentrated pieces of chocolate. This has meant me needing no additional morphine whatsoever. I was shocked to find the medical cannabis was the most effective painkiller ever. It makes me drowsy but good for emergencies and severe pain when I need to sleep. Knowing it was there if I needed reduced my perception of day to day pain too and I used it a few times per month. Some folk hate to think a drug normally used recreationalyl is being used. However I think some pharmacy drugs like morphine are far worse. I see it as coming off heroine to reduce to cannabis. It is difficult for Behcets patients to get onto legal trials of cannabis in hospitals because we are not a large enough group to be commercially viable. It was suggested by my pain consultant and GP but I was turned down for the trial due to not having MS/because I have Behcets. I relied on a medical herbalist who had a large practice. It ran at the risk of being G illegal and was closed down recently and my practitioner is now in prison. I have no doubt the police will be coming here and investigating my use. But it did give me pain relief that offered less risks that morphine and gave me better quality of life for the past 10 yrs. I wouldn't change that. I can only say it worked but would not advocate the use due to it being illegal and patients could end up going to prison. Names and addresses of patients prescribed are given to the authorities and not all places have a licence to prescribe it.

  • Just read your post and it sounds like a combination my son, dtr. and I have been wading through for years now. The first to be diagnosed was me: fibromyalgia. I already had impossible migraines, chronic fatigue and crippling pain, numb and tingling hands and feet. Occasional thrush when immune system can't keep up - mostly when my primary gives me something without taking into consideration the patient he is treating! I was seeing a rheumatologist for seven years and in his clinical trial for Savella - when i crashed, he was a total asshole. Still had NOTHING for pain! Dumped him and let neurologist handle everything. Next, my son - Behcet's. Hideous sores mouth.. and so sick he couldn't go to hosp. [Drs. at the ER were even more ignorant than believable since they have computers and all they need to do is type in the symptoms presented and they will get the answer. Dtr. has fibromyalgia and lupus. They both get the mouth sores. All in all a total nightmare - either one or all suffering and we trying to tread water. We take meds. I take lyrica which helps me get out of the bed. A very well read dermatologist told me to find a geneticist and see if he can find a "hidden" lupus gene. I'm sure they are connected. Your symptoms sound so much like lupus to me! I have been tested twice and came back negative. My mom was tested eight times and came back negative. Dr. told me doesn't mean you don't have it. What you are describing sure sounds like an immune problem. Find an infectious disease Dr. with experience with all three of these illnesses, Ask them if they have patients with it. Having one other patient with it won't do you much good. I have had to go on these blogs to request new meds I've heard of on here. The colchicene was a good one. It is helping my son and we are trying to convince my dtr. to try it. Wishing you all of the very best. Trying to navigate life today is hard enough with a smile for all of the unsympathetic world around us, but the pain, fatigue and discomfort is a common cross we bear. Stay on here and you will get ideas to be pro-active in your own care.

  • Thanks for your message- I can't imagine having to manage myself and kids all with these awful symptoms and the daily battle to get someone to help/ listen/ and god forbid, actually treat!!

    I have spoken to a nurse at st Thomas's who has told me they see lots of patients with symptoms that are indicative of sle or similar, but negative bloods. She did say that a firm diagnosis may not come easily, but they will provide treatment.

    I'm trying to remain open minded as to diagnosis, but I am very much aware that my symptoms do strongly suggest a lupus like condition, and as the steroids helped, I am hopeful that hydro chloroquine may provide me with much needed relief.

    Hope you and your family get the support and treatment needed without too much of a struggle.

    Hx

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