You guys could diagnose me but the consultant won't!

[Angelcake]

Well I got a letter yesterday from the consultant telling me that despite the ANA being 'weakly' positive for the third time running (1st time 1:320 2nd time not sure 3rd time 1:160)

he was passing me back to my GP as I didn't show any of the symptoms of lupus! He also said that 5-10% of the population have positive ANA so it was not significant!

Below are a list of my symptoms. Is the man brain dead or just plain lazy?

Starting at the top!

Hair falls out (always and for many years) saw a consultant about it 17 years ago

Headaches which last all day (sporadically)

Brain fog, forget what I'm doing, stop doing things mid task, forgetful etc (sporadically)

Had an unexplained seizure 12 years ago)

Extreme fatigue, fight to stay awake in the afternoon, can't go out on a night. (always)

Droopy eyelids (sporadically)

Ulcers in nose (sporadically)

Crackling sound when i move my head. (always and for many years)

Neck pain (sporadic) MRI shows multilevel degeneration

Shoulders always ache

Collar bones grate when I rotate my shoulders (sporadically for many years) saw a consultant about it about 10 years ago

Lose feeling in both arms when bending at the elbows. (always for the last 2years) negative nerve conduction tests

Shooting pain/ache in thumbs and index finger joints, can no longer carry bags and driving/ironing is painful (always since about 9mnths)

Extremely dry cracked skin on hands (sporadically)

Chest pain (sporadic)

Palpitations/racing heart (sporadic) saw a consultant about it from being a teenager

Lung problems in the past which needed hospital admission/regular physio 

Pain in rib cage which is worse on the right side has been ongoing for  2mnths affecting sleep

Chronic back pain (constant for at least two years) MRI shows disc disease

Feeling terrible hungar pangs but then full after a few mouth fulls of food. Then feeling stomach pain for hours and hours after eating (sporadic)

Heavy, tired aching legs. Terrible shin splints after walking less than a mile. Reduced numb feeling in left leg after sitting down for five minutes. Had to change manual car for automatic as I was unable to use the clutch effectively. 

Very painful achilles tendons and pins and needles on soles of feet when waking on a morning.

Positive ANA blood test three times in a row.

What do you guys think?

[MaryF]

Did you have any migraines as a teenager.. I have already answered somebody else on here.. if you click on my name and see recent activity. I have weak (ish) results and also a speckled ANA pattern indicative for mixed connective tissue disease. There is a cross over on with Lupus with a small percentage who also have Hughes Syndrome! If you read what I put under another post, this may ring a bell or you. Also patients who have Hughes Syndrome often also have Sjogrens and also thyroid problems. I have these three, plus Lupus plus one other... Have a read and let me know what you think. Also thyroid problems are often not diagnosed.. and some slip through the NHS testing system. Mary F x

[Angelcake]

Thanks for that x

[tintin49]

angelcake i have to say i am absolutely shocked at your post. i have read on here its not always needed to have a positive ana result for lupus. is this consultant a rheumy or a specialist lupus dr..

mind you even when you get diagnosed with lupus it does not always make a difference imao still get treated like a neurotic moaner by some health specialist x

[jemmyjemjem]

I too am shocked by ur post. My ANA was neg last time but 1:320 twice before with a nuclear pattern. Mine is apparently affected by my steroids, which I have been told can have an effect on the ANA. I saw a lupus rhumie with my.list who pretty much said I'm not surprised ur ill u have lupus. Started on meds straight away u r within ur right to request to see a different humid. I found.mind by word of.mouth and by looking on our local private hospitals websites to see which rhumie in the area specialised in lupus. I then went to me gp ready for a fight but my rhumie is a friend of ny gp. I would deffo ask for a second opinion. I would also print off the symptoms of SLE sjrogens MCT etc etc and highlight urges symptoms on those lists and take them and say look here I am not insane. Good luck xx

[Angelcake]

Yeah I am going to ask my GP to refer me to someone else as I'm only 33 and don't see why I should be written off to go and live my life this way without any help! Yes my consultant is a rheumy, but obviously doesn't specialise in lupus!

[thestones41]

I'm not at all shocked by Angelcake's post. My husband has all the classic signs of SLE, inc. butterfly rash, chronic pericarditis, nasal sores, dry eyes....and many more. He also satisfies 5 of the ACR's criteria and feels really ill constantly.

Saw a rheumy last Thurs after fighting with GP because ANA was negative, and he sat 2 feet across a desk from my husband and said "Why do you want to have Lupus so much?"

Also said, "Get it out of your head now that you have it, because you are making these symptoms happen by believing it" And "What did you hope to achieve by coming to see me?" !!!

Although we had taken a list of his symptoms with us, he totally ignored it and suggested, in front of me and without asking how long we had been married, that my husband has a blood test for HIV. When I suggested that by now I would also surely be HIV positive, he literally sneered at me and asked when I had had an HIV test. I told him that as a regular blood donor, I am screened 3 times a year. Also, I am fairly certain that being HIV positive, your white cells are low, and my husband's have been consistently high for 2 years.

I have never in my life had the misfortune to encounter such an arrogant, condescending,unprofessional, spiteful, offensive and downright ignorant little man, masquerading as a doctor.

His parting shot was to state that my husband did not fit any single criteria of the ACR to make a diagnosis, and when I suggested that he take a look at the list we had brought in, and that in fact he had a positive for 5 of the criteria, he ended the "consultation" and opened the door for us to leave, and to wait for the results of the HIV test in 3 months.

This doctor had an unbelievable attitude, and although I am fully intent on making an official complaint about him, I am very well aware that we will be written off as neurotic know-alls demanding a diagnosis, when all we want is for a doctor to listen, acknowledge and to either rule out, or confirm Lupus so that my husband can begin treatment of some kind, and to get his life back. Good Luck to all in this situation, and keep fighting for diagnosis and treatment, and for doctors everywhere to learn about this condition.

[Callie in reply to thestones41]

Hi Angelcake

Have you had an Anti DNA double stranding blood test at all, Prof Hughes told when l saw him in 2004 that the Anti DNA double stranding test was disease specfic for Lupus.

Ask your GP if he has actually tested for this if not insist that it it done.

I had a rhumey at the time who told me all my tests were negative, when l got copies of my hospital notes prior to seeing Prof Hughes l found that my anti dna test done in 1998 was very postive, but he had written on the results " Tell her they are normal " ! Sometimes it is wise to check up on the proffessionals.x

[Callie in reply to thestones41]

OMG !!!! that is disgusting in the true sense of the word.

I hope that when you make an offical complaint that you make it direct to the PCT (Primary care trust) and not just the practice manager or senior partner, might even be worth a call to The General Medical Council.

Dont think that will be very happy at his attitude or lack of understanding and compassion

And l would certainly change GP.

[angus50 in reply to thestones41]

My goodness what a arrogant man I too would be complaining. I have to say though I too have met those men who go under the name of doctor and who think that they can speak as they like to a person and get away it. I put in a complaint via the pct and it was dealt with very well, so I wish you all the best and I hope that it's not long before your husband gets the treatment he deserves.

[Angelcake]

That really IS SHOCKING!

[Hidden]

This sounds exactly like my old consultant. Told me for years that nothing was wrong, I managed to get my GP to refer me to St Thomas's and so far they have found 17 diseases, 7 which are life threatening!!

This really does sound like something he would say!! Horrible, arrogant, stupid man

[LupusKaren]

thestones41. I have met some arrogant and downright dismissive consultants in my time, but I am left here seething on your behalf, inexcusable and unprofessional to the max. I urge you please to contact the PALS service within the hospital, and channel a complaint via them, they will help you with advice.

You are in real terms the customer, and you and I pay this consultant's wages, he is there to provide you with care, not humiliate or dismiss you like this.

I am so sorry you suffered at the uncaring hands of this individual, complain, and then complain some more.

[thestones41]

Thank you all so much for your comments, and helpful advice. It's very kind of you to reply. I have tried three times today to contact PALS but as yet have only managed to get the answer machine, and I would rather speak to them. I am going to keep trying until I can and will let you know !!

Many thanks again, and Good Luck to everybody who finds themselves up against it in trying to get help.

I just do not understand why so many GP's and consultants are so ignorant of this.

[jemmyjemjem]

thestones41 .. that is disgusting ! how dare he treat anyone like that, I really do hop you make a complaint and that your husband gets some help soon

Callie .. I was told you can only have an Anti-DSDNA done when you have a positive ANA ?