Drs appointment today following 2 weeks of every other day injections... said he’s stopping them due to neuro symptoms and won’t have another for 2 months!! I explained that in the BNF book states until no further improvement... did not listen at all !! I said I felt really worried and anxious about the length of time ... he said you’ve got stacks in your system you’ll be ok!!!!
He gave intrinsic factor result of negative (been on injections- shouldn’t have been tested) I said that it will give false results due to the injections he said no it won’t !!
I’m overwhelmed with their lack of knowledge and acceptance of our research of there own guidelines that they take no responsibility for their irresponsible actions !!
Sorry to rant I’m so annoyed !!
He said to come back for a chat in 2 weeks !! I’m tempted to see another doctor in the practice for a twelve opinion!!!! Rahhhhhh 😤
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Did you prepare a list of your symptoms to give to your doctor showing which had improved and those which hadn't? Also is it possible to take someone with you to the appointment as the doctor will be less likely to pooh pooh you in front of a witness?
I went through my symptoms and that no improvement has been made, he just wasn’t getting it at all ... didn’t listen to anything I said ... I’m making a telephone appointment tomorrow to discuss with another doctor who gave me first injection... I’m not giving up !! Thank you x
In the post from Cherylclaire , above yours , her consultant , who was very knowledgeable about PA , suggested having IFAB tests until one came up positive. That’s what you need . . Because the test isn’t reliable , it can take a few goes apparently . But it will be difficult to get that from NHS I guess . You could get tests from private labs , but I can’t imagine how much that might cost . Once you have a positive result , it’s the proof that you need .
Have just looked up cost of IFAB test with Medichecks — £79.00 plus cost of venous blood withdrawal .. £25.00 So thats quite an expense ! I don’t think that I’ve helped you very much .
I would feel like changing doctors . . Glad to hear that you are persevering . Best wishes .
you may have more success from writing a short letter,copied to the practice manager, and quoting relevant information from the BCSH standards which you can find here
eg around accuracy of the IFAB test and the fact that the standards refer to IFAB-negative PA as a result.
Testing too close to an injection can cause a false positive. How close is too close varies depending on the exact test method - maximum is 10-14 days. Minimum is 24 hours.
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Overwhelming fatigue, chills, shortness of breath, weakness - recent labs
Living in U.S. and recently diagnosed with PA
Oral thrush eventually successful treatment 
success for now
