Diagnosing auto-immune conditions

Week in and week out, sometimes even daily, this and other boards and blogs associated with auto-immune conditions feature posts from sufferers and their carers about the problems of getting a decent diagnosis of their particular disorder. So many of us seem to be in this position that we could be forgiven for thinking that the rheumatology section of the NHS is in crisis. Just why do so many of us spend years seeing so-called specialists and yet get no further forward with either an accurate diagnosis or effective treatment? So much so that many of us pretty much give up and go away preferring to suffer in silence than spend half of our lives waiting for our regular three monthly rheumatology appointment to come through nine months late as usual. I really don’t know why my rheumatologist wastes her time telling me that she will see me in three months when I know from past experience it will be the best part of a year until I am allotted a slot and then I will have to turn up and wait for at least an hour and a half past the stated time to get in and see her as she is “running late”.

In my own case it seems that the ‘experts’ are agreed that I have an auto-immune problem but at different times I have been told that it is Lupus, Psoriatic Arthritis or Undifferentiated Connective Tissue Disorder plus Sjogrens and a touch of Raynauds on the side! If cancer or diabetes services ran like this there would be public outrage on a massive scale so why do we have to put up with it?

Now I know there will be those who spout the usual lack of resources argument but if the billions of pounds which have been hosed at the NHS over the last decade can’t even get me an appointment on time it’s not surprising that I ended up paying for hydrotherapy out of my own pocket. I also know that it is not easy diagnosing AI issues. There are well over eighty conditions that fall into our bracket ranging from MS to ‘bog-standard’ rheumatoid arthritis and even more 'bog-standard' osteoarthritis and most of the tests and scans are pretty non-specific so I do have a degree of sympathy with the rheumatology consultant whose list I end up on. But, come on, is the best you can do really to ask me why I stopped taking the methotrexate six months ago when all it did was make me throw up. And, Yes, I did phone the nurse helpline way back then and explain that I was having problems with the medication and, yes, she did say she would sort me out an appointment and so here I am. Six months later and flaring horribly.

At least I have been fortunate enough to have one bright spot in all of this in the shape of my GP. He has been willing to refer me to several hospitals and even to try less conventional treatments like acupuncture and mindfulness meditation to help with pain management but there is only so much he can do. His job is to get me to the relevant specialist and that is where the whole system breaks down and grinds to a halt.

My apologies for the rant. In the end I just want someone to explain why there seem to be so many of us in exactly the same position that we are forced to rely on brilliant boards like this one to get any real understanding of how we feel and practical advice on how to cope.

[Natura]

Stephen...boy it's the same here in the US. In fact, because my blood work was positive for lupus in April, and then negative for lupus in August, according to the rheumy..I am cured and not sick. Frustrating? Yes, and he made me feel like I was crazy and cut me off when I tried to explain what my symptoms are. See you in 3 months he tells me. I won't be going back there. So sorry. It seems we are just suppose to accept our fate. Hope you can find answers. I am doing natural health..I am not so good at eating right, but take a digestive enzyme to help when I don't eat right. (Which I have to say is every day because I am too tired to cook gluten free meals. I already cut out dairy..maybe this is why my blood work shows negative for lupus). Good luck and keep posting and getting advice and care from this site. Maybe that's all we really need.

[jellynpain in reply to Natura]

Hi,

I am uk based & have found myself in the same boat, going around in circles for years now.

Makes me so angry that there is consideration for the huge detrimental effect on my life. When I show even the slightest bit of knowledge on my symptoms I get 'shut down' from them, yet they aren't showing signs of getting to the bottom of the cause of my health problems.

Rant over, I know it's just me encountering this. Health what?... oh yes service. Ha ha!

Seems we help each other moreover.

X

[florence1884]

Thank you so much, in five paragraphs you have described my life in a nutshell!

How right you are, we get shoved aside, our illness belittled, appointments getting further and further apart, and in the end we "give up and go away to die slowly on our own". I have been to more than one GP with the comprehenisve health diary that I keep daily, and been told "well, which of these symptoms do you want me to treat?". After seeing a heart specialist, the rheumy nurse and then my GP in rotation a couple of times (none of whom could get to the bottom of the problem and kept referring me back to the other), my GP finally lost his temper with me and said "I'm not a bloody expert, what do you expect me to do about it?". I now live with permanent SOB, can't walk very far and have my heart doing somersaults most of the time.

I have decided to suffer in silence even although my lupus/scleroderma/reynauds (whatever they want to call it) is in constant flare. I have learnt that medical appointments are somewhat fruitless. My hospital 3 monthly appointments keep getting further apart and my trip to St.Thomas gets put back also until I am lucky if I go up there every 18 months or so, if that.

The last GP I saw back in January told me, "for goodness sake, its about time you accepted what you've got", and I took that to mean go away and stop bothering me.

The ESA people told me a couple of years ago, after winning my appeal, that it couldn't go down as a permanent decision because my condition is fluctuating, (NOT IT ISN'T, I AM ILL 100% OF THE TIME), and that if I ever find myself too ill to work and needing to apply for ESA again, that I will have to go through the whole appeal process again and again and again and again after being found fit for work.

I therefore work self-employed from home as a transcriber, like a hampster on a treadmill that I am unable to get off, some days with no work, other days working 15 hours or so. The stress of working and the worry of not getting any is making my illness very much worse but I am afraid what the benefits system would do to me. I wake up every day literally terrified to go to the mailbox in case my DLA has been withdrawn or the disabled part of my Working Tax Credits have been withdrawn or someone is going to ask questions about my health and then say "prove it". What am I going to say about not having gone to the doctors for ages or the fact that the rheumy thinks so lightly of my illness that they keep putting back my appointment or the fact that St Thomas, as lovely as they are, seem to make light of my symptoms, saying my blood tests are normal? Okay, at St Thomas' I see people in wheelchairs who are obviously very much more ill than I am, but at the end of the day I have flu symptoms, joint and muscle pain, blurred vision, sob, irregular heartbeats, extreme tiredness, weakness, mental fog, sore throat, earache,pains in the neck EVERY SINGLE MINUTE OF EVERY SINGLE DAY.

You are right, why do we have to suffer like this in silence? It is so unfair.

[digger1]

Its the same in scotland, I am now fed up arguing with the rhuemy dept. If I phone helpline never anyone there they have 48hr to get back to you, I see the rhuemy every 2 years if ill in between which I am its nurses. Im sure ive ranted before but im told you see her every 2 years a nurse yearly, shocking!! I go for steroid jags when im really bad I mean cant move even then its a fight. I have RA and Fibro both bad. Im 11 years with these diseases and I constant pain so know exactly what your saying, I was told by a nurse the more I go for jags the oftener I can see rhuemy I dont like taken jags all the time as they cause other problems. Like you all they are intrested in is bloods ive had methotrexate 6 years had sulphasalizine very ill on it leflunomide now plus battery of others leflunomide now given me constant trots phoned to say this told to keep tryingit did but no change, now stopped taking it getting appointment for april MAYBE meanwhile flaring all the time but thats fine for them. Last appointment with nurse I totally lost it, now think im severely depressed my own doctor says im NOT I know im Not he says its because they know ive been neglected and want to shift blame away from them. Also no physio for 4 years no ot imput for 9 years eventually went mad now getting physio no hard and fast dates, ot thought id moved area as she hadnt seen me in so long, reckons I fell off the radar Never!!!.now had enough getting referred to other health care as in fife if you have had it longer than 5/6 years your a lost cause others in this area say the same. Sorry for ranting but had a crap few weeks

[roubyroo]

I was told on first appt at Louise cootes unit that I had mild lupus. I was feeling confused at the time so didn't give all symptoms. Rheumatologist from Cumbria got in touch with lupus unit Dr as he was "interested" to know what my dx would be (I had made a complaint against this Dr). My dx on 2 nd appt was UCTD and hyroxychloroquine prescribed. I had been persistently fobbed off for years by GP and they knew I was unhappy about this. After being ill and put on steroids by a Q doc my GP dx me with pmr. Next appt with lupus unit my dx is retracted with no explanation. I pursued a dx relentlessly due to my young daughters symptoms and was determined she should not go through life as I had done with no help and feeling suicidal at times due to feeling so ill with no help. Because of the problems I caused the Dr at lupus unit ignored abnormal blood and urine results etc and did not give a thorough examination as he had with me. He ordered no blood tests despite the abnormal results I gave him. I should add that in July my daughter and I were in a car accident. Our treatment at both hospitals was appalling (I had been airlifted to the RVI) my 13 yr old daughter to another Hospital. On two occasions after discharge I tried to get help for my daughter and after a Dr in Newcastle rang for daughters info from hospital she'd been admitted to would no longer help her after initially stating she needed admitting for x rays and kidney check. I was told I hadn't broken a rib when I was coughing up blood by 4 separate Drs despite the last one looking at an x Ray of a clearly broken rib with hehemothorax (I paid for copy of scan and 2 nd opinion) . I find it questionable that after paying for copy of daughters cat scan that there are further injuries that this hospital did not report and also urine sample ' lost'. The list goes on but my families healthcare has been severely compromised due to pursuing a dx for my daughter and I after putting 2 complaints in.

[watercolour]

I know, it is disgusting and our suffering is shocking being left on our own to cope with this. I really do wonder about it all? I am lucky I have a supportive GP and he tries hard for me... only to be let down by the hospital! Are all these drugs doing us any good anyway? I have to ask that from my heart? My flares are so bad that I can't get my head off the pillow and I know it is in my brain! The ANA test was positive once and then it wasn't positive, so then I get sent away in agony. So they think I am OK? I seem to get a change of diagnosis every time I go and I really don't trust the specialists anymore. I try to live the best I can with this and it is hard on my family with little or no medical support. It seems there is little understanding with autoimmune diseases. So where is it leading me I don't know... how I loathe what has been done to me and how it undermines someone who is very honest but most of all suffering extremely and I do know the severity is leaving damage. So all of you on this page, I send my love and I know how you feel. XXX

[LupusKaren]

Stephen thank you so much for your eloquent post, you may not have known it at the time when you wrote this, but I firmly believe that nearly everyone of us with a auto-immune condition, be it Lupus, MS et al, can relate to part if not all of your post.

Reading the replies so far, my heart breaks, and I am not saying this for effect, it really does break, and fills me with such an immense sadness, that so many of us, have spent years, and time out of our lives trying to convince Consultants of every speciality, to please listen to us, and think outside of the box. Consultants who do think outside the box, are rare, very rare.

It seems to also be a pattern, that when our blood results or scans, are within normal margins, our pain should automatically disappear according to these consultants.

Just over 10 very long years to finally get to see a Rheumatologist, by which time I was done with consultants, I just went into the appointment totally closed off, I just thought it would be more of the same, I remember very little from that appt, as my husband had to do my talking, I was physically and mentally done. 2 hours I was with my consultant, and came away with my diagnosis that afternoon. I was numb, stunned, then followed anger, sadness and euphoria because I felt vindicated, and I still feel that today.

Today I am sad to say it looks like I am taking some steps backwards, not with my Rheumatology team, but other departments, in last few months, have had two A & E admissions, they were brilliant, the General Consultants after were shockingly bad, rude dismissive, but the worst thing, one even had the audacity to say Lupus was only like a bad cold, he felt my wrath that morning I can tell you.

I have also been through Gastro/Gynae/Renal and my next stop next week is Neurology, and I can hardly wait for that appt NOT!!! The difference being, my Rheumatologist has referred me, this is a follow up, after finally getting the official diagnosis of Cluster Headaches, and being told to retry a medicine that made me very ill, very insistent they were that I did.

My GP and I discussed and we disagree, and I certainly am not going to try the other suggestion Lithium, OMG are they nuts or what.? My husband is taking me for this one, and I have my notes prepared, I am not going to come away from that appt without (a) being heard and (b) they actually assess what my Rheumatologist asked them to do.

Daily I am in constant pain with SLE or APS symptoms and a myriad of other problems that could be attributable to any one of them, why can no-one tell me why my feet are so painful like walking on glass or hot coals, it makes me scream. Why in the mornings can I not feel my legs from knees down for at least an hour until stretching exercises gives me sensory feeling back. Why do I find myself staring into space or in a room I have no recollection of hobbling into. Why do I have feelings of complete loss of identity, followed by an overwhelming sense of sadness, that has me sobbing into my hands for hours, and more lately, why have I felt suicidal, which scared the crap out of me so much, I made my husband take me to my GP the sense was so strong, I do not want to die, so is this a little Lupus gem or what? These are the situations our Consultants do not see, do not live, every day, 52 weeks a year. I should quickly add, I am now seeing a Life Therapist privately for my mental health manifestations.

Like many, I got pensioned out of a job I loved, and now have to suffer the indignity and very cold and cruel process of ESA, but I keep in mind, I paid into the system for 30 years, so now I need help, and as my condition will never improve, either remain the same or worsen, I just keep sending the same information with review notes from my medics.

I know this is a very long ramble and I am sorry everyone, Stephen's post just hit a nerve with me, and what do they say, better out than in.

For all of you who resonate with Stephen's and my and everyone else's post, I send each and every one of you love and understanding, we are stronger than we give ourselves credit for. I know its hard having to fight to get what is rightly ours, and I wish those of you who have got so tired you have had turn away from the NHS, the strength some day to get back into it, to get the care you rightly deserve and need.

Stephen your post I really think should appear in a Lupus Newsletter, you speak for so many of us.

[beaton]

Hi StephenH,I came across your comments by accident looking for something else. I haven't been diagnosed with lupus but then I've spent the last 14 years going from department to department trying to get a firm answer to my health issues. Your article hit the nail on the head,why do hospitals not have one department that is for all autoimmune illnesses. Like most people I have a list of them but each department looks at different aspects and don't talk to each other. The rheumatology department dismissed me after three years because I couldn't tolerate the meds. but never gave me a firm diagnosis. I've spent six years fighting endocrinology to get the right diagnosis and meds. I still haven't sorted out all my health issues.