So glad there is you! Massive thanks to all who have kept me going- even very recently I was wondering why bother keeping on at the doctor. However with all your support and advice, I kept on track and now have a doctor who understands my condition as an individual, and has spoken to the receptionist and nurses about my appointments for loading injections and what happens next, and everyone is now following the doctor's lead; It seems this is new ground for them. The doctor acted to increase injections and a longer loading period because 3-monthly was useless to me. She just needed to have confirmed by tests what she was seeing with her own eyes- and the MMA test did that. She had requested this locally with no response, so went via St. Thomas', after seeking advice from a haematologist.
For those about to give up:
I first went to the health centre with various (I believed unrelated) symptoms about 22 months ago and have since been to dietician, Hospital: bowel department and gastroenterology (soon), physiotherapy, x-ray, CT, MRI and only ever refused treatment for depression. Keep going, even if it feels like endless elimination! Take someone with you, and ask people here for advice or support: it's there in bucketloads!