Patients Name

Medical History:  A trial drug for parkinsons disease this had no benefit and made me feel very ill.  I now take dihydrocodeine, very little relief.

Personal History:  Melo first appeared as a small lump on my right arm age 28, I visited the doctor who sent me for an x-ray at North Herts hospital in Hitchin under my then married name of Joan Spooner. In 1969 I was with my daughter in hospital when the orthopedic surgeon noticed my arm and sent me for x-rays at Westminster Hospital in London, I was referred to Mr Lancaster at Lister Hospital Stevenage, buy then it was noticed that I had Melo on the back of my skull as well. As he wasnt sure about Melo he asked if I would try a trial drug used for Parkinsons disease (injections twice a day for a month) to try to relieve the pain, this made me feel very ill. I was taken into UCLH for a small operation in 1970 and the doctors were very interested in my by then very deformed right arm, I was given more x-rays and physio, then I was told there was nothing more they could do. I was sent to Nuffield Hospital in Oxford in 1978 under Professor Clark?, he gave me more x-rays and performed an operation on my elbow to try and release the nerves, he also then discovered I had problems with my blood and spinal spondylosis. Unfortunately shortly after this my second husband died, so I was unable to attend appointments. I have been attending Lister Hospital Stevenage. In 2001 I had an operation on my jaw, thinking it was a broken tooth, the surgeon was surprised to find it was the Melo. I have been given quartisone injections and physio, they keep telling me I am not in pain and that I am imagining it. Now I have hardly any feeling in my right hand, or pins and needles, I suffer with terrific pain in my neck and shoulder. Reading your website has at least given me some hope and reassured me that I am not losing my mind.

Comments:  I am keen to help the Melorheostosis Association UK in anyway I can. I would also like some tests carried out on my children as they are showing similar signs of the disease.