Hi I am recently diagnosed with PA, well according to the Dr. it was 'borderline' at 155 and my antibodies test was negative. I was given 6 loading doses over 2 weeks before Xmas. This was despite me reporting severe neurological symptoms and pointing out I had been to the Dr's years ago with the same/similar issues and dismissed and telling them what the guidelines said for neurological issues. Felt I was not believed and really had to push for a referral to a haematologist as recommended in the guidelines, they obviously didn't believe me and said I had to be seen by a neurologist first, who subsequently did refer me. Just before my diagnosis I was referred seperately to a specialist for the pins&needles/numbness and severe joint pain in left hand. I was sent for an EMG to hospital. Result in the end was a phone call from muscoskeletal Dr last week to say I have Carpal Tunnel Syndrome (early stages) he said! I told him I had PA and was having and had in the past same on right hand. He just said he stuck to his diagnosis, made me want to laugh! While waiting on those results, the referral to Haematologist resulted in a letter (I never saw him/her) to the doctor saying with neurological symptoms, loading injections should be until no further improvement and then every 2 months and went on to say that some patients benefit from lozenges instead of injections, which surprised me from the Haematologist. I was refused a copy of the letter and have had no direct contact with him or even know who he is. I then was restarted on injections every other day (3 a week) with no end date, I have to tell them when I feel better. Only thing with this is they ask me every time if I have any improvement and it's hard to say, I have up and down days and I have had pain return in right hand along with numbness and pins & needles and also burning feet, which I must admit I haven't felt in a long time. Not sure how much improvement I can expect or how long I should continue every other day. I started this set of injections on 25th Jan so this is second week. Sorry for long post, feeling a bit less woolly today!
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