My Battle

By Stephen Ralph

30th April 2017

 

During the Spring of 1996 I suffered the flu and I was off work for about a week.

 

Two weeks after this I suffered a whole-body flair-up of polyarthralgia which is pain in most of my joints just like arthritis.

 

By the Summer I was forced to walk away from my job as a diagnostic radiographer at Poole General Hospital in Dorset.

 

I was just weeks away from my first management training course.

 

During September 1996 I was told I was suffering from Post-Viral Fatigue Syndrome.

 

By the end of 1997 I was retired from the NHS on medical grounds. That was the end of my ten year career.

 

I was forced to move back to my parents who became my carers and I got very ill.

 

I was roughly 75% bedbound and 95% housebound due to the severity of my symptoms.

 

Nothing much changed in my life until 2004 when we moved house and changed GP.

 

2004

 

I met a young doctor who took an interest in my ill health.

 

I had taken some photographs of my knees that (every night) went hot, pink and blotchy.

 

I had also been doing some research into sero-negative forms of arthritis.

 

I still remember the chill that went down my spine when I read about Behçet’s syndrome for the first time.

 

            

 

I went back to my GP and told him about Behçet’s syndrome and it just so happened that my GP had a friend who suffered from Behçet’s.

 

My GP then looked at these photos and pointed out to me the supra-patellar swelling and told me that I needed a complete re-appraisal of my ill health.

 

My GP trialled me on a drug called Celebrex and for the first time in many years, my arthritis symptoms got a bit better.

 

This then set me on a five-year journey to get that diagnosis recognised.

 

During 2016 – 20 years after I had first became ill - I attended the Behçet’s Centre of Excellence in London where I was told by Professor Farida Fortune - the most senior specialist in the country - that I had indeed been living with a flair-up of Behçet’s for between 15 and 20 years.

 

The Battle

 

2005

 

My first Behçet’s referral did not go well. The doctor I saw told me that he had a group of patients under his care and they all had dozens of oral mouth or genital ulcers.

 

Prior to my appointment I had been in touch with the Behçet’s Syndrome Society and I had benefitted from a long conversation with one of their senior telephone advisers.

 

http://www.behcets.org.uk/

 

I was told that it was possible to have Behçet’s syndrome with only four or five oral ulcers a year. I was even told that no mouth ulcers at all was also possible.

 

Ulcer1 Ulcer4

 

When I met the specialist I mentioned this but he wasn’t aware of this fact.

 

So, he offered to refer me to another specialist for a second opinion and I was referred to a bigger hospital in the East Midlands.

 

I met two doctors that day but I came across the same problem again and realised there might be an issue with the diagnosis I had already been given ie. Post Viral Fatigue Syndrome.

 

The problem I faced was that when I turned up for an appointment, there was no evidence that I had mouth ulcers. My knee inflammation was also absent because it only appears at night.

 

So, the Behçet’s Syndrome Society advised me to start collecting photographic evidence which I duly did.

 

I obtained the name of a specialist who offered private referrals so my next referral was to a private hospital where I met a doctor who said in the opening sentence “I might not be able to give you a diagnosis today…”.

 

Again, the referral was a failure.

 

2006

 

The Behçet’s Syndrome Society then offered to pay for another private referral to the Moorfield Eye Hospital in London.

 

I had no eye symptoms during the daytime but it was hoped that the consultant might give me an onward referral to another London specialist.

 

Again, the referral was a failure.

 

The next referral was to another large east midlands hospital.

 

My G.P. referred me to an immunologist this time. On the day I saw 2 doctors. By then I had collected some digital photographs that I had put on a CDROM disk.

 

Back then I had no tablet computer or a laptop computer so I was unable to present them on a screen of my own.

 

That day I was told that the hospital had no facilities to look at the digital images on my CDROM disc.

 

I could not understand what was going on.

 

After that I was referred to a dermatologist and my local city hospital.

 

Again the Behçet’s Syndrome Society had told me that this doctor was “Behçet’s Aware” so again I was hopeful.

 

On that day I first met the registrar and as like all the times before I went through my symptom history and how severely I was being affected.

 

By then I had got myself a phone good enough to show images and I had printed out the images I had been advised to collect.

 

I showed them to this registrar and he examined my back and chest to corroborate what I had told and shown him.

 

The registrar said that he thought it was a case of Behçet’s but that he had to confirm this with his consultant so he left the room.

 

I was alone for about 5 minutes until the door literally burst open.

 

The consultant had an angry face and asked to see my back and chest.

 

He looked at the images I had taken and then told me I had Prurigo simplex and then stormed out of the room.

 

The registrar sat next to me and apologised for what had just happened.

 

He told me to keep going so that is exactly what I did.

 

Prurigo simplex is basically itchy skin and I was later told that it was caused by obsessive scratching of my skin.

 

So basically I was being told that I was causing my own skin lesions. I could not have felt more insulted.

 

The lady I had been liaising with at the Behçet’s Syndrome Society could not understand what was going on.

 

It was clear to her that something was going wrong with all these referrals I was having.

 

I suggested to her that the common denominator was my present diagnosis of Post Viral Fatigue Syndrome that was also called “CFS/ME”.

 

It seemed as though I was suffereing from predjudice due to my "CFS/ME" diagnosis.

 

At this point I wrote to my local health authority and told them what had been going on and that this wasn’t the fault of my GP who had been incredibly supportive.

 

Indeed it was my GP who had found a local charity who paid for my first private referral.

 

I got a very kind letter back saying that they also supported me and that I was to be allowed a further referral and that if this also failed; I was to tell them what happened.

 

2007

 

My next referral was to a hospital in London to see a neurologist.

 

I attended the clinic and was again hopeful. That day I had a CT scan of my head and I also had a lumbar puncture procedure to check my cerebrospinal fluid for contaminants.

 

The following day I went home.

 

Again, this referral failed.

 

I then moved to Scotland where my next referral was organised.

 

2008

 

This time I went to a large teaching hospital on the east side of Scotland.

 

I later found out that my GP had put the barest of minimum detail on the referral letter and had enclosed some letters relating to 1996 when I had been diagnosed with “CFS/ME”.

 

I was greeted by a doctor who did not look at all happy to see me and the only way I can describe that consultation was that it felt like a cross-examination interview in a police station.

 

The report that was subsequently written recommended that I have no further referrals. It said that I had already been seen by some of the best doctors so there wasn't much point.

 

The report made claims that I had seen a Professor at the Queens Medical Centre in Nottingham that I didn't even know and had never seen.

 

I wrote to that hospital pointing out that this doctors report had serious errors and eventually the doctor corrected her report.

 

I then wrote to my local Health Board here in Ayrshire and stated that as a patient with a diagnosis of “CFS/ME” I was entitled to specialist care so I was in fact entitled to a further referral.

 

The Health Board agreed and I was granted a further referral to the rheumatology unit at my local hospital.

 

Prior to the referral, I was sent a copy of the referral letter.

 

The letter had several important errors that I got corrected. I was told by the secretary at my practice that my GP had simply not read my medical records correctly.

 

When I met my specialist, I was asked about my medical history all over again.

 

Again I took along photos that I had printed out of mouth ulcers, skin lesions and knee inflammation which are all key symptoms of Behçet’s disease.

 

This time, my doctor suggested that I be trialed on a drug called Colchicine.

 

I was also put onto a drug called Pizotifen that is used to treat migraines.

 

These drugs worked and further reducing my arthritis symptoms and latterly reducing and mostly stopping my migraines that previously had lasted for days on end.

 

2013

 

Fast forward to 2013. I saw another new rheumatologist at my local hospital.

 

He put me onto a drug called Sulfasalazine. This drug is an immunosuppressant and again it worked a bit more to reduce me poly-arthritis symptoms. It also worked at reducing my skin problem.

 

During September 2013, my rheumatologist asked me if I minded him carrying out a full screen of my hormone levels. I said that this was fine and so those tests were done.

 

It was discovered that I had low testosterone and that some of the other tests I had were not correct and I was immediately referred to an endocrinologist.

 

On February 4th 2014 – the day before my 49th birthday, I was told I had a pituitary disorder known as Hypogonadotropic Hypogonadism.

 

I was asked about my entire medical history and by the end of that consultation I was told that I’d probably been living with that condition for my entire life. I left in shock.

 

Blindsided by this I asked for a copy of my full medical records.

 

I subsequently showed my endocrinologist extracts from my medical records showing the crush fracture of one of my 10th thoracic vertebra I had suffered at the age of 11.

 

I had also suffered other fractures over the years.

 

I told him that when I had been a radiographer in 1995/6 I was being short tempered with one of the staff and that my GP had referred me for counselling because I was having trouble with forming a relationship with my closest female friend.

 

I was told that this was to do with the further progressive derangement of my hormone levels as I was getting older.

 

I also showed him letters showing that I had reported “chronic fatigue” at various points in my adult life going back to 1985. In fact, I had been in hospital for 9 months between 1979 and 1981.

 

Back then I was diagnosed with idiopathic juvenile osteoporosis and some unknown form of sero-negative spondyloarthropathy. I was told to keep fit, exercise and drink milk and all would be well when I'd gone through puberty.

 

2014

 

Back to 2014 and I was told I needed a CT scan of my head to check for a pituitary tumour as well as a bone density scan to see if I had osteoporosis.

 

When the results came back in June they showed no pituitary tumour but yes, I did have osteoporosis especially in my back.

 

My T score was -3.3 in my spine.

 

The threshold T score for osteoporosis is -2.5

 

 

 

So, that is the end of my story.

 

I won my battle but it was a totally empty victory.

 

As a footnote, during 2016 when I went to the Behçet’s Centre of Excellence in London, I was told by their clinical psychologist that I had been suffering from a form of clinical predjudice known as Diagnostic Overshadowing.

 

https://en.wikipedia.org/wiki/Diagnostic_overshadowing

 

All I can say is with what I know now; all the evidence anyone could have ever needed was sitting in my medical records that had been left mostly unread at my GP Practice.

 

Had any specialist had full access to my GP records and had bothered to read them; I have no doubt that they would have had a far better understanding of my medical history than any summary from a GP who had not bothered to read my medical records.

 

During the last 18 years before being put onto monthly hormone replacement therapy injections, I had been losing my temper with family and friends.

 

By the time I got give hormone replacement therapy I had lost most of my friends.

 

It's pretty impossible to apologise to those former friends and family members as they have all moved on in their lives. I have tried.

 

I am now 52 years old.

 

I am single.

 

I now realise why I was never able to form relationships, get married or have children.

 

Since roughly the age of 21 I had concluded I was naturally asexual.

 

The best years of my life are now behind me.

 

One last thing.

 

I'd really like to thank Georgina Seamen formerly of the Behcet's Syndrome Society for all her excellent advice.

 

I kept going when most of those around me were telling me to give up and just accept everything.

 

I didn't give up. I'd advise anyone who has any doubts about their diagnosis to get hold of your medical records and hunt for any clues.

 

Your GP does not bother to read your medical records. They don't have the time.

 

If any mistakes have been made in your medical past then those mistakes will become clinically accurate facts.

 

In my experience, doctors do not check for mistakes. Specialists never see your medical records unless your GP sends them extracts.

 

Our system in the UK is seriously flawed.

 

As a patient you may well become a victim of those flaws as I did.