Hi, I need some help in getting the right doctors and a diagnosis and treatment for a condition that I have that is extremely painful. I am partly better, but my current GP says that he does not know what to do or who to refer me to. I had changed over to him more recently after a previous GP had been totally unhelpful and would not refer me to the right consultants at the time.
In 1993 I had an awful sudden headache that would not go away and it became localised on my left side but seemed to also affect my whole head. It felt as if there were knitting needles digging away in my head and also as if I had hit my head on something. I had some oedema at the time and my heart was affected, but no nausea and thought that I had had some kind of stroke. This was awful pain and it created some odd sensations in me. In addition I had pain down my left side. Pain killers would not help and the pain was constant. I had a few years previously had an allergic reaction to a synthetic vaccine, that was given to me by my employers, which caused numbness, but no pain at all in the same area of the head and down the left side of my body, but this subsided quickly. The headache that began in 1993 seemed to be worse the more active I was and I also suffered from conditions on my left side such as frozen shoulder and a problem with inflammation of the cartilage in my left foot but it had also affected my right foot to a lesser degree. No brain scans were done at the time and no investigation was made at all even though I was unable to work during this time. The pain became worse a number of years later and I started to suffer from blackouts at which point I saw a neurologist in 2003 (the GP would not refer me on the NHS), who diagnosed thunderclap headache. Nothing showed on the MIR scan that was taken in 2003. I changed my GP. Then I was referred to a pain consultant who used acupuncture and other manipulations. The head pain disappeared three months after the first treatment by him and I had been putting up with that pain since 1993 until late 2004. However, the body pain continued, which itself was awful. In 2005 I hurt myself after stretching a little to put up a shelf and thought that I was having a heart attack. I was given an ECG and referred to a cardiologist. The heart tests were negative, but the cardiologist said that the pain may be caused by a trapped nerve in my spine. I then saw a good neurologist who said that I have Tietze’s syndrome which causes the muscle wall in the chest to become inflamed and press on the heart. I have felt as if I was about to die many times during 2005 and 2006 when I had this. I controlled it by acupuncture before I got the diagnosis, but then used Naproxen which worked. I was also asked to try Gabapentin for the nerve pain. Some manipulation by the chiropractor helped a little as she said that I was leaning to one side. I had used the anti –inflammatory for two years, but I still have the soreness in the left side and I am trying not to be too physically active as I will hurt myself and the swelling over the heart will come back. I was referred to a physiotherapist in December 2006 who gave treatment with TENS, but this caused me to get a lot of pain and I felt extremely ill again. She said that I was very sensitive and did not know what the problem is. I was unable to do anything, all I could do was to rest for three weeks after that treatment and I had the sensation of the tens machine still on me during that time. I know that the nerves down the left side of my neck and body are every sensitive. I fainted a couple of months after this and I have sometimes not been able to use the garden tools as the vibration causes my left arm to stop working completely but the effect only lasts for a few hours. My left leg was also affected and I collapsed. I then developed numbness in my left small finger and it has remained like that. The new GP is looking at the symptoms as they arise, but he says he does not know what to do about the chest pain which I still have (2009) though it is not as bad as it was and I have stopped using naproxen. However, I know that the swelling will return as soon as I become more active. The GP does not know what type of doctor to refer me to now. I have a feeling that the problem is easily solved and it is caused by muscle weakness down my left side. Perhaps some deep muscles were affected by the thunderclap headache and this is the cause of the various cartilage inflammation problems that I have had. I think that that the looseness of the muscle on my left side has caused a nerve to become trapped behind my left shoulder in the back bone and this is both the cause of the pain in my left side, the Tietze’s syndrome and other cartilage problems. This logic is all mine as I have not told the GP my suspicions. The condition is disabling and I want to get rid of it as well as the underlying causes. I would be grateful if you could tell me the name of a doctor who would know how to deal with this whole problem and bring about a cure. I live in the UK and would prefer to see someone in this country or nearby who knows exactly what to do.