I am a thirty-nine-year-old mother of two beautiful girls. I have always had pointers towards Sjögren's over the years, like dry skin in my ears, continual sinus problems, and inability to wear contact lenses, but my story really began in 2007.
Whilst on holiday in Italy I began experiencing extreme fatigue, numbness in my left leg and difficulty in breathing. I was taken to a hospital in Sorrento, and after blood work and a chest X-ray, I was sent away with Septrin antibiotics. I continued with my holiday as best I could, and was due to travel back home to the United Kingdom on the international train.
I made it from Sorrento to Rome, but upon arrival there I had another relapse similar to the last and I couldn't get on the train. I felt weakness in my limbs, chest pain, dizziness and I just felt exhausted. My husband took me to the Rome hospital, but they found nothing. I felt so ill that we had to pay for a room in Rome and I flew home the next day.
On arrival in the UK, I was taken to hospital where a barrage of tests were done, which all showed nothing. I was fatigued, suffering from pins and needles and the left hand side of my face became numb. My spine felt like it had glass in it and I hurt. It continued like this for weeks.
I returned to my GP who discovered one of my knee reflexes was absent, so sent they me to a neurologist and this is where it all went so wrong. I was referred for a brain scan and the results showed multiple white foci which were evident for multiple sclerosis (MS). I was told there was nothing I could do but wait until my next relapse.
I had a year of fatigue, nonspecific muscle pain, face numbness, swollen glands under my jaw and my left armpits, Raynaud's, and peculiar rashes. I hated the sunlight in my eyes and felt generally unwell.
I carried on with good days and bad days, fell pregnant with my second daughter, had a vile pregnancy and delivered her in October 2008. Four months after having her, I felt like I had been hit with a brick. I lost sensation in my face and it tingled, my fingers went numb, and when I walked it felt like my left leg was going to give way. I started having serious swallowing problems. My skin felt parched and my left eye began feeling gritty and tired.
Off I went to the most arrogant neurologist I have ever had the misfortune to meet. Whilst on the way, my tongue went numb and I couldn't swallow. I was terrified so my husband called an ambulance. I thought I was having a stroke. They took me to the neurologist, who told me I was having a panic attack. He recommended low dose diazepam to clear up my 'muscle problems' which he thought were more likely caused by peripheral neuropathy than MS, but it was too early to be certain.
I returned to my GP to collect my diazepam. By the time I got them, the 5 mg he had prescribed had turned to 15 mg. I took them like a good girl. I slept and nothing changed.
Two weeks after commencing them, I started feeling detached and then I began vomiting every day. This continued for two months and I lost two stone in weight. I couldn't keep food down. My mouth became dry, and my hair began falling out. My face was still numb and I felt two hard lumps in my left cheek. I felt like my body was in some sort of crisis and quite honestly felt like I was slowly dying. My joints ached. My glands were swollen, and my muscles felt weak.
Back into hospital I went, for more blood tests and more drugs. They tried everything to stop the vomiting but nothing worked. I had an endoscopy, nothing. A further brain scan, nerve conduction tests, yet nothing could be found.
I was constantly in tears as I felt so utterly dreadful. I had spent almost three months in bed. I was too exhausted to look after my children. I KNEW there was something wrong but no one was interested as my blood tests had all shown normal.
I was sent home from hospital with the title of some long medical word which translated to "hypochondriac" or possibly suffering from "post natal depression". I was horrified, depressed, ill and I couldn't make them listen to me anymore.
A month later I was still sick and had problems swallowing. I begged my GP to refer me to someone else, and I still recall his letter to the ENT specialist, "Please see this woman who is suffering from anxiety and reassure her there is nothing wrong with her stomach or throat."
That consultant shoved a camera down my throat and said, "There is nothing wrong with your throat." He sent me for a barium swallow. The radiologist said I had gastroesophageal reflux disease (GERD) and that the valve that closes my stomach contents in wasn't working. He told me to prop my bed up and start ranitidine tablets. I did, and the sickness finally stopped.
At my follow-up my GP said, "I will be pleased to see you again when there is something wrong with you."
I got myself built up again, after months of vomiting and weight loss. I consulted my dentist in respect of the feeling in half of my face. He referred me for a scan of my face. Here it was discovered that I had salivary gland stones, an enlarged thyroid gland and enlarged glands generally down one side of my face. He suggested I go back to my GP.
I reluctantly I did, but to a different one in my surgery. He had clearly already heard about my apparent "hypochondria" and said it was quite a normal occurrence. I gave up even trying to get him to listen to me. I was now in the position of beginning to believe that I was perhaps suffering from some psychological disorder and began a course of antidepressants, to no avail.
I stopped the Amitriptyline, and I stopped taking anything whatsoever. It made my swallowing and fatigue even worse. I refrained from seeing my GP and began researching everything about MS, still believing this may or may not be the case.
I found a new neurologist and paid for a private brain scan and consultation just to get a definite answer about the MS. He told me it was highly unlikely I had it as some of my symptoms crossed with it, but were not typical.
I then found Professor Graham Hughes, who is a world famous rheumatologist based in London. This is the man who Hughes Syndrome is named, since he discovered it.
I asked my GP to refer me to him. He laughed in my face and said, "Sure if that's what you want, but it will be a waste of your money."
This time his letter read, "Please see this woman. I think she has fibromyalgia and she thinks she has lupus." I had never once mentioned lupus to anyone…but it got me the referral.
I went to see Professor Hughes in London in 2010 and it was worth every last penny. He listened, he cared, he ran a Schirmer's test, a Rose Bengal test, and blood tests. He looked at my skin, checked my history of symptoms, looked at my brain scan — and told me I had Sjögren's. Wow. That easy.
He explained that Septrin antibiotics at the outset and the barrage of drugs that had been pumped into me despite the doctors not knowing what they were dealing with had exacerbated my symptoms tenfold. In particular, most of them should have been avoided completely. I had had diazepam, zispin soltab, nortriptyline, pregabin, lansoprazole, stemetil, and ranitidine, to name but a few. He told me to be wary of drugs and doctors that prescribe them when they don't know what they are treating.
He prescribed plaquenil, which I have yet to try due to the long term effects on vision. Today, I avoid all medication, with the exception of pain killers for my many aches and pains. I exercise weekly, I avoid dry crackers and biscuits to help my swallowing and dry mouth and tolerate the pins, needles and facial numbness. My eyes are not too bad, there are no ulcerations yet, I wear shades whenever its bright (which is not often in the UK, ha ha).
My skin resembles the Sahara desert. My fatigue is better if I eat light meals and keep up with exercise. My children keep me focused and positive, but there are still many days when it bites you and lets you know that its still fighting with me. I won't give in, despite feeling dreadful some days. I think of the alternative diagnosis that could have been far worse.
I hope my story helps anyone who has been ridiculed by the arrogance of some medical staffers who would be better suited to an alternative career that avoids patient interaction entirely. In total it has cost me 5,000 in medical bills plus hours of frustration and pain to get my diagnosis.
Please don't give up hope if you don't know what you have. Keep going. You know your body better than anyone.
I wish everyone health and happiness.
Story submited 02-07-12
Story posted 02-07-12 SLE
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