Saturday, 3 September 2011

I'm a medical mystery! Part 1

I'm Clair, I'm 36 years old and I live in Worksop, a medium sized town in the UK.

Since my early teens I have suffered ill health but no-one has ever been able to accurately diagnose, treat or cure me so I set up this blog in the hope that someone out there can piece this jigsaw together and help me live a healthier life. I was born in 1975, I was healthy and a good weight. I was bottle fed and I had good health (apart from the usual childhood illnesses such as mumps, chicken pox, tummy bugs and cold viruses). In my early teens I started to get a lot of throat infections. I had 3 bouts of tonsilitis in 6 weeks, each time I'd finish the course of antibiotics it would come right back again. I became very run down and I was tested for glandular fever but the result was negative.

When I was 14 I was very ill with a chest and sinus infection, I had a fever of 40C (104F) and hallucinations. The doctor was called but refused to visit me instructing my parents to give me a 5th dose of paracetamol (I'd already taken 4 doses - the daily limit). I had a very uncomfortable night of severe pain in my head (suspected brain swelling) which was made worse by the coughing so the doctor was called again, this time he visited and I was given morphia tablets and antibiotics. It took me 3 weeks to recover.

My health wasn't the same after that. I sprained my achilies tendon twice although I could not recall any injury to cause it. I had so many mouth ulcers down my throat I found it hard to swallow. I also had flu like symptoms and pain in my knees. When I was 15 I had my booster vaccination and I became very run down again. I developed boils on my bottom and under my arms. I had an infected spot above my eye which caused my whole eye to swell up. I felt ill and wiped out all the time, I would come home from school and my mum would find me asleep in my room.

I went to see my GP who diagnosed post viral debility, but this persisted and I went to see a neurologist who said it wasn't the worst case he'd seen but I probably had ME. They did a lot of tests but everything came back normal. It was difficult to cope with feeling so ill all the time. I was a thin active person who ate a healthy vegetarian diet. I was happy, I had friends, I went out on the weekends dancing or to gigs. I didnt' want to be ill but no-one seemed to know what I could do to get better. I was prescribed Mianserin which made me hallucinate, then Prozac which made me so driven I ended up doing too much and came crashing down when I ran out of energy.

I struggled going to school, I always felt like I was coming down with a cold or the flu, that really grotty feeling when your throat starts to get sore, your nose starts to get stuffy and you start aching and find it hard to concentrate. I missed a lot of lessons, I was always at my worst in the mornings and struggled with the 1 mile walk uphill to the school but I still managed to take my GCSE exams and pass them all with good grades.

I wanted to take a year out to try and get better but my parents insisted I continued my education so I enrolled in college to take my A levels. My health continued to deteriorate, I missed more and more classes until it got to the point where if I did manage to make it into college I would be too wiped to actually learn anything so at the beginning of my second year I quit. By this time I was 17 and had moved into my own home with my boyfriend and we were planning on getting married.

When I was 18 I started having trouble with my knees. I got up one morning and they were stiff and painful but I couldn't remember injuring them. It was painful to stand and difficult to walk. I went to the doctor who sent me for physio but apart from giving me a walking stick it didn't help at all. The more exercise I did the worse it got.

When I was 19 I had a massive relapse/flare. One afternoon I started to feel ill, I was aching all over so I went and took a bath but when I tried to get out I couldn't. It was like all my strength had been taken away. The next few days were hell, I couldn't stand, my knees were excrutiatingmy painful, I had pain everywhere, I was given a commode because I couldn't get upstairs to the bathroom, I was given lots of pain killers but they didn't help very much. The doctors were baffled and I was admitted to hospital. They ran lots of tests but everything came back normal.  One doctor said they might have to drain the fulid from my swollen knees, the next doctor said my knees weren't swollen at all!  I got upset when I overheard the doctors talking about how "I believed I had ME" and "isn't that what film stars get?".  The ward sister told me not to be so melodramatic when I burst into tears.  No-one was taking me seriously and no-one had a clue what was going on so after a few days they discharged me.

I gradually improved, but not to my previous level of health and fitness then 6 months later the same thing happened again. 3 weeks previously I'd been to the first Whitby Goth Weekend and I'd done much more avticity than usual. I was admitted to another hospital but again all the tests came back negative so after a few days I was discharged. General consensus was I had ME and there was nothing they could do about it.