That is strange because you are right. Technically if you have the diagnosis of EDS/HMS then your mum if presenting with the same symptoms she would be assumed to have EDS/HMS because you are a first degree relative. The other symptoms you describe all fit too. I wonder whether this is because they dont trust the diagnostic criteria? I will ask when we feedback to him.
I know this isnt much help but I wonder if you could persuade your mum to see him again? I know that would be incredibly hard to do but if she goes back and points out that she fulfills all the criteria and has a first degree relative whether he would consider the facts. Maybe you could go with her? I went with my mum to see Prof G after he had already diagnosed me and I am glad I did.
I do understand some of the confusion you are feeling because when our local paeds consultant stated my daughter didnt have EDS/HMS I was very unsure of my own diagnosis and he made me feel unsure of everything I had come to understand. Does that make sense? Our local rheumy had alreayd diagnosed her with HMS/EDS as well. BUt just having him tell me he didnt agree and it was all nonsense was very mentally chalenging! It had taken me years to come to terms with my own diagnosis and then to have a consultant sit and tell me my daughter didnt have it felt like he was knocking me right off my feet. It did make me angry, very emtional and I lost my confidence for a while too. Eventually I insisted my local rheumy referred her to GOSH to see Prof G and Sue Maillard who confirmed her diagnosis. They were surprised I had needed to do that but understood. It was all made worse because I was helping lots of people with their own medical professionals yet was unable to sort my own daughter out! I was then angry that I had had to go to London to 'prove' my daughter had EDS/HMS and angry that she was a lot worse than I had realised.
Dont let them do that to you Lil_miffy. Your diagnosis is correct and obvious to anyone who meets you, it has taken you a long time to get where you are and dont let them do the same to you as happened to me. You have passed a huge turning point in your life and now especially with the new bungalow (if you accept it) you have the chance to start living life to the full again.
See if the consultant will see you both together or you write a letter pointing out the obvious. It may be as you said that she is older and he isnt used to diagnosising at that age but I do know he is very willing to learn and is open to discussion. If you need any more support or info please let us know.
HMSA SENIOR MEDICAL LIAISON OFFICER/ ADMINISTRATOR
Retired RMN, HEDS, Fibro,
eldest son, HEDS, dyspraxia, IBS, ADHD, ASD
middle son, HEDS,
youngest daughter HEDS, dyslexia