I was diagnosed with PA a few months ago with my levels being below 50pg. (Range - 200 - 900) I was suffering with a lot of nuero symptoms along with the classic PA symptoms.
I was given the initial loading dose, but unfortunately this did not help matters at all, I was suffering with a lot of pain in my hands, back and feet and a lot of tingling and numbness. They GP dismissed this as not relevant to my PA and assured me that I will gradually get better.
I was tested for Chrons, coeliac disease and the test for antibodies all came back negative but I was told it was definitely PA as my levels were so drastically low.
My GP didn't seem to think he should keep treating me with injections until my nuero symptoms showed no improvement. I quoted BSCH and NICE guidelines and even brought them in to no avail.
He finally gave me another loading dose when I was rushed to hospital with an abnormal ECG reading, when I attended the doctors the next day he agreed maybe I should be given more injections. After the further loading dose my memory problems, tiredness to a degree and confusion seemed to of gotten a lot better, yet my breathlessness to a degree, balance, tingling and numbness remained.
I attempted to try and get the GP to listen again to be told it's probably the stress and anxiety of realising I have a long term illness. No matter what I said I could not get anyone to listen. My GP then took a blood test telling me he would check my antibodies again to be sure, he also checked my B12 which I was unaware of. My B12 of course came back as in the 2000 and again my antibodies as negative.
He then used this to tell me I do not need another injection until three months time despite the fact he had put in my notes previously due to nuero I should have them two monthly.
To add to all of this my digestive problems that came with my PA symptoms have seemingly gotten worse. Everything I eat I get a sharp pain and only pass loose stools (sorry). They have agreed to send me for a colonoscopy.
My doctor even had the nerve to tell me that my nerve damage is probably permanent yet wont refer me. I am now two months down the line from my last injection and really suffering, I also go away on holiday in three weeks.
I have previously spoken to the PA society who have always been helpful.
I guess I now know that it's time to self inject but I'm worried about having to start this. I was sent some B12 from B12.org in case it came to this.
Is there anything else I can do? Should I of been referred to a Neurologist? Any answers would be gratefully appreciated.
Sorry for the long rant!!