Like looking for a needle in a haystack

12 05 2012

If you’ve ever been ill with some selection of random symptoms that the doctor can’t comprehend, there is a high chance you’ve been told a diagnosis is like “looking for a needle in a haystack” In the past few weeks I’ve had two different consultants say that to me, both for different ends of the body, both symptoms highly likely to be related to one another.

Now it’s not that I don’t appreciate the complexity of diagnosis when it comes to multi-morbidities, believe me, when you are spending every waking moment trying to make sense of your rapidly failing body and you’re not yet 40, you really do appreciate any effort made.

My problem lies in the fact that these doctors only care to treat their related specialism and symptom in isolation and not look at the wider picture. If they’re not looking at the body as a whole, then of course its like looking for a needle in a haystack, one bale at a time.

I recently was linked to this article Patients with multiple Health Problems Overwhelm UK Health System where it is discussed how people with multiple-morbidities, like myself, are overwhelming the NHS. It also highlights how this is now more prevalent in under 65s than previously thought and how specialists are treating the problems individually rather than as a whole. I can understand how this approach costs time and money for the NHS, not to mention unwell people having to make multiple visits to different hospitals and departments for different appointments and tests every month. This will obviously have a knock on effect for the economy through lost work days or sickness benefits.

In my case and that of many others, it would be far more productive if the different departments could work together. It is obvious that the problems are inflammation related. I currently have a diagnosis of sorts of Inflammatory Bowel Disease, although we’re not sure which one and so I have no treatment arranged. This means living in pain and not very far from a toilet. It was purely a fluke that they found out. When I left the colonoscopy I was told it was Irritable Bowel Syndrome and absolutely nothing more was said or done about it for 8 weeks until I happened to come across the biopsy results in an annual asthma checkup appointment.I was essentially told to “learn to live with it”, which is exactly what I’ve been doing for the past 5 years.

I also have terrible, what they call, “reflux” which has no reflux symptoms other than extreme chest pain and inability to swallow as there seems no space for food to pass the esophagus. So I’m left taking medication for that and esophageal spasms, which is problematic to stop whether or not you have reflux. I am waiting for tests on this. The test result appointment with the gastro-intestinal consultant in June, is likely to happen before I actually receive a date for having the tests, but that’s for a whole other blog post. I firmly believe this “reflux” is related to the IBD, usually given the passage of the pain and the ensuing diahorrea. It was never considered as such by any of the 5 GPs I spoke to over the past 18 months and the GI doc is a little confused by it all.

In the past 12 months have had multiple vitamin and mineral deficiencies, including resulting ill effects, despite improvement in diet. I have been told this is not related to the “reflux” or the IBD. I have been taking supplements for this. At least my tongue and throat is no longer ulcerated, raw, swollen and on fire.

I have swellings in my joints that I’ve had for years and was given anti-inflammatory gel to rub on. One GP told me, “you have to decide whether you want to have sore wrists or a bout of asthma” when I questioned taking and anti-inflammatory while asthmatic and knowing that I react to ibuprofen. They never looked into why my wrists would randomly swell and seize up. I often have to wear sexy beige splints which makes wiping an ever dribbling bum quite unpleasant!

4 years ago, I saw a rheumatologist, who told me I had Chronic Fatigue Syndrome and that I had to exercise more, her attitude when I got a bit despairing was, “what do you expect me to do about it?” I firmly believe you know when a diagnosis is right or wrong and I knew that was wrong. A different rheumatologist told me I a Phase 4 Sleep Disorder, but that it was too new an area of study to do anything with and all they could offer me was sedating antidepressants to tide me over – “oh and to come back in 10 years when something may have changed”. Now the last guy was probably onto something there, and I honestly believe that more time and money should be put into studying sleep disorders as a means of treating systemic conditions. That said, I had no interest in taking antidepressants when not depressed. I had to just learn to “live with it”.

So back to this year. My eyes have been red and painful for years. Again GPs had just told me it was the way I was, my family thought I looked permanently stoned. Turns out I have something called Scleritis which is inflammation in the layers of the eye. It was quite advanced and while I had been led to believe it wasn’t that serious, their emergency “don’t panic” behaviour and subsequent treatment, and the multiple consultants coming in to have a “wee look” suggested perhaps it was a bit worse than I had expected. At least I still have my eyesight. For now. Scleritis is not pleasant at all and I only found out after a freak chance encounter with an optician, to whom I owe a lot, as she inadvertently solved a huge clue in this weird years long health puzzle of mine. I also look über cool wearing sunglasses indoors at night!

I have been getting treatment for the Scleritis since March time when I had to go to the eye A&E and wait forever to be seen. I have been put on steroids which is also helping keep the IBD symptoms at bay thankfully, although have caused me to gain 14lbs in weight (and counting). They are now looking into a condition called Sarcoidosis after anomalous blood test results and an Xray for lung lesions. Now let me tell you when a doctor mentions lung lesions you forget to breathe for a while! The lack of communication with this eye doctor about the possible condition has left me a little confused and no doubt given the other goings on in my crap body, them too. I have no idea what is going to happen with my eyes or any condition causing the problem.

There is a distinct lack of communication between doctors and patients when it comes to all this kind of stuff and it presents a huge problem to people who will obviously be worried about their failing health, while waiting 8 weeks + at a time for tests and results and doing so over and over for different medical departments.

Now here is my personal issue with all this. The problem is obviously inflammatory but there is no one doctor who can deal with the problem as a whole and as such my days are spent arranging and visiting different specialists for what is essentially part of the same problem – my body.

I have no idea the cost of seeing a single consultant one time but seeing 3 different doctors in one week and doing this on a monthly basis, or more, must be costing an absolute fortune; not to mention the different tests and treatments they all put me under. Yet not one of these doctors has communicated with the others and they all rely on me to tell them of the findings of the others. I am no specialist (although I am getting there!) so there is no guarantee that what I am telling them is medically accurate.

The notes they send to the GP reveal nothing so they are unable to explain any more to me and indeed I tend to inform them of what is going on to the best of my layman’s ability. Each department is so wrapped up in treating ‘their symptom’ none are looking for the cause or the connection with the other symptoms. It is quite literally a case of not knowing arse from elbow from eye. Treating the symptoms is not finding the cause and in the long run, knowing the cause and heading off in advance of flare up would be more money efficient. They are all duplicating the same blood tests within a week or so of each other, costing money, when they could share the tests and results. It’s supposed to work that way but doesn’t seem to.

Each organ and appendage does not work independently within the body, it is all connected. In complex cases, the body should be looked at and treated as a whole. Other than a random encounter with an NHS homeopath 3 years ago after a CFS diagnosis, not once has any doctor suggested we discuss the multiple problems with any of the other doctors and it would seem the note taking process never leaves much available on the shared access information system, if indeed they are entered in time for the next appointment. The eye hospital hasn’t even put my records online so none of the other doctors can look at what they’re saying or doing. There appears to be a lot of departmental competition and ego stroking/bashing, which is all very well on a so-called professional competitive stage but when it comes to people’s lives, it is entirely inappropriate.

It would seem a simple solution to have a single doctor who dealt with everyone else and relayed the results and treatment options to the patients. I hear of such mythical creatures and the article I mentioned above suggests this would be a far more financially and treatment efficient process. At one point I thought this person was the GP but when you become “too complex” for them they refuse to do anything without the permission of the consultants and you can be waiting forever for them to do anything.

I love the NHS and I am extremely grateful to it. That doesn’t mean there aren’t inefficiencies that need addressed for the benefit of the patients. It seems with all the penny pinching, often the important people in the process, the patients, are being ignored.

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2 responses

12 05 2012
Helen Shackleton

Your story sounds very familiar and you have my sympathies. It took me about 12 years to get a diagnosis for my various problems involving joint and back pain, chronic fatigue and uveitis – turned out to be ankylosing spondylitis which I’m now on anti-tnf treatment for, which isn’t a miracle cure, but has made a massive difference to the quality of my life. A lot of your symptoms could be related to A.S. or one of the other conditions related to it (Crohn’s, Colitis, psoriatic arthritis). You’ve poss been down this road, but have you been checked for HLA-B27? (genetic marker associated with these conditions). A.S. is often not considered in women as many Doctors mistakenly believe that it’s a disease limited to young men (and I think a lot of Docs automatically assume women are being hysterical/hypochondriacs and think we are overplaying our symptoms and that perhaps some anti-depressants might sort us out). There’s a very helpful organisation, http://www.nass.co.UK which has lots of info about AS and all related conditions, and advice. As I say, you’ve poss been down this road already, but your experience and symptoms sound so familiar, that I thought I should get in touch and mention. Huge crossed fingers for a diagnosis and decent treatment.

13 05 2012
grumpyhatlady

Thank you for your comment. I don’t have any of the usual symptoms associated with AS and I’m sure they’ll have tested for it all anyway. I hope it doesnt cause you too much bother now.

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