Wednesday, 19 March 2008

A Golden Opportunity Part Two.

Things did indeed change in June 2006 – but to explain why I need to back track to Feb 2006. I examine my breasts now and again – not as often as I should I know – and I found an abnormality. It wasn't a lump, just odd – not quite right. I went to the Doctor who was pretty certain that is was not a tumour. He however referred me to hospital anyway just in case. I wasn't seen until May – but I was a non urgent case. I had expected to be told everything was ok and that would be an end of it. Instead I was given all sorts of tests including needle biopsy, mammogram, and a scan. The scan and mammogram were inconclusive on one side, but showed a shadow on the other side – the 'normal' side. Another scan at a later time showed this to be a cyst which was drained there and then.

The consultant was still not happy and decided to remove the abnormal material by surgery. This was done in Stirling general in the middle of June. I also had another lump removed as well, which came up a couple of weeks before the surgery. A biopsy was taken of the abnormal tissue and the lump. Long story short , my lump was made from dis-organised cells and I was told I have Fibrocystic Breast Disease – a benign condition. Phew big relief. The abnormality I had felt was enlarged milk glands – a condition called Duct Ectasia another benign condition. So although I am liable to have cysts and lumps pop up from time to time it is unlikely to be anything to worry about.

A week after the operation I started aching. Inconvenient, but been through it before, so just thought it is a time thing. Then the weeks started to go by and the aching continued and got worse. I still tried to ignore it. We were in the process of selling our house to Lixtroll and peat and moving ourselves into the newly rebuilt Steading. I put it down to a viral thing plus stress.

Two months went by and still no sign of relief and I was becoming worried. I went to see the Doctor. He thought I had a rheumatic type condition and gave me steroids. Which helped, but seriously upset my stomach. He then tried various treatments before referring me to a Rheumatologist. I got an appointment in November 2006. It was then I was told I had Sjogren's Syndrome and put on anti malarial tablets. No not because I had been playing with mosquitoes, but because the pills have a side effect of relieving the aching associated with Sjogren's. I was given various blood tests to confirm the Sjogren's and it was assumed that this was just a formality. I already had the dry eyes, dry nose and aching. They did the Schirmer test on my eyes which confirmed that I had dry eye disease. I had to stop taking the anti malarial pills in January because I had thought they were upsetting my stomach.

Then in March 2007 I went to see the Rheumatologist again - all blood tests had came back negative. So I was left no-where. More tests ensued. A mouth biopsy was booked, but that took months to come through. All the blood tests were coming back within normal range. I was left hanging with no further appointment until after the mouth biopsy and with no idea what was going on with me. And with no form of treatment. In the end we paid for me to see a private consultant. I unfortunately saw the same one that I was seeing on the NHS – he was a bit less dismissive of me as a private patient, but not much. He came up with a few more blood tests. They all proved negative. I finally had the mouth biopsy in October – nearly a year after I first went to see the consultant. The mouth biopsy showed that I had mild chronic inflammation, but not what was causing it and confirmed that I didn't have Sjogren's. I expressed surprise at the mild bit of the inflammation – my Doctor said that my symptoms fluctuated and a biopsy of my muscles during a bad flare up would confirm chronic inflammation. But at least this proved I had inflammation.

After all this I got a letter in the November from my consultant saying there was nothing more they could do for me and they didn't need to see me again. No referral, no advice - nothing – just dumped. I felt very let down.

Also at some point during all this between breast problems and aching, my mammogram results got lost along with all my notes which made life difficult when seeing anyone at the hospital. I complained on several occasions, but everyone just seemed to shrug and come up with all the problems of the hospital. My notes appear to have been found now, but were missing for about a year. So as you can imagine my faith in the NHS has taken a battering over the last 21 months.

Meanwhile In December I was sent to have a gastroscopy - which showed that my stomach problems (which had started in January) were being caused by a Hiatus Hernia . . .The time delay here was me – I refused to go for the tube down the throat treatment . . . I had had it done before without sedation and didn't like it. This time I noisily demanded the drugs and got them. Much better. I didn't see the consultant afterwards was just told you have a hernia – go and see your Doctor in two weeks . . .er thanks . . .Thank goodness for the internet. Every patient being diagnosed at the hospital where I have been should be told how to Google their symptoms it is the only way they are going to find any information on what is wrong with them.

I went back AGAIN to my Doctor. Firstly to discuss medication for my Hiatus Hernia. I took and still take the acid inhibitors – to avoid scarring of the stomach wall in the future. I was given other pills to empty my stomach quicker. I have stopped taking these as I didn't like the side effects and didn't feel they helped at all. Next on my list I asked my wonderful patient (sorry pun) if seeing a Endocrinologist would be a good idea in case my aching and tiredness symptoms were linked to my Hashimoto's. He agreed and a letter went off. I was hopeful. I hadn't seen a consultant about my Hashimoto's since 2004 and there were a few questions I wanted to ask – plus the aching and symptoms I had were very similar to the ones I'd had in the couple of years before I was diagnosed with Hashimoto's. My Doctor also said that if we drew a blank with the Endocrinologist then we could look at seeing an immunologist. He felt it was important to get a diagnosis and treatment and a prognosis of what was going on with me.

I got an appointment to go and see the consultant on March 13th at 14.30. One minute I was hopeful and the next thinking it was a waste of time . . then I thought this is just part of the elimination process and necessary.

So last Thursday I went to see the Consultant. We ended up not discussing the Hashimoto's at all. He clearly had read through my blood tests and some of my history and had already made up his mind as to what was wrong with me before he even met me, or examined me. I had written out a list of all my symptoms in the hope that this would help with the diagnosis – the Consultant said 'thanks for that', but didn't even glance at it, or ask to examine me. Then he sat there and told me what he thought was wrong with me . . . Quick bombshell and here's the door . . . . although I had trouble understanding what he was saying and kept asking questions. I was told that I would be tested for Adrenal gland function (I think this will be at my Doctor's but I was having trouble concentrating), but that he fully expected it to be ok. So I was sent home with a self help manual to read and a head full of questions, eyes full of tears and a heart full of lead. I felt dismissed yet again. But I will go into what happened and how I am coming to terms with it all in the next few blogs.


milla said...
Bloody hell, have just read the last two at a sitting and am gob-smacked. How do you keep so cheerful! No wonder you've made a friend of a chainsaw, sounds like it needs to be revved at the consultant. And the ninny who lost your notes. You poor thing (mindful of Ivy: this is NOT sympathy ...!)

18 March 2008 07:07

suffolkmum said...
I've just done the same as Milla - read it all in one go. Without meaning to sound like a rubbernecker I am keen to know what his diagnosis is, and whether it has helped or not (or indeed is accurate). Talk about going through the mill. x

18 March 2008 07:19

chrish said...
Had a rather bruising encounter with a consultant last week myself - got rather brusque treatment for daring not to have osteoporisis like Ma. Left reeling but well - goodness know how you're coping after your session.

18 March 2008 09:40

tattie weasle said...
I love the NHS for emergencies but for everything else it can be a problem perhaps taking your trusty chainsaw along??? No perhaps we don't want them getting the wrong idea! We DO need you around you know...
Like so many I think you are QUITE QUITE amazing!

18 March 2008 13:48

cait o'connor said...
I agree with all that has been said, you are are amazing. I look forward to hearing the diagnosis.

18 March 2008 15:00

exmoorjane said...
My God, you must have been spitting blood (well, obviously I don't mean literally spitting blood) but so much ineptitude....makes me want to rev up my own chainsaw. jxxxx

19 March 2008 04:27

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