Pernicious Anaemia Society
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Update!! Got a telephone appointment on Thursday

Hi after all the fantastic advice on here .. I have manned up and asked for more jabs ..

I went to the nurse today for jab number 6 ( the last loading one ) and was told my next one would be 3 months, I explained that my symptoms had not really improved and that due to most of my symptoms being nuro I should be following the BNF guidelines..

The nurse was kind but said that because she can only follow the instructions of the DR I would have to speak to him .. She has made me a telephone appointment for Thursday .with him.

I'm just preying he helps me as I am terrified of having long term nuro damage.

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Go for it Kellybee it's for your life....

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Good luck.

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keep at it.....

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Explain your concerns, have a copy of the relevant part of the bnf infront of you so you can read it word for word. State that it is the second paragraph and you feel it is relevant to your treatment.

You could list your symptoms mention the worst ones first as they will be the ones which are heard. You could do a full symptom list and tell him/her you will leave it at reception for them to look at fully.

If they arent listening say you want them to investigate why you have these symptoms if its not b12d.

I hope you get the result you want- i didnt! Hence me having taken my health into my own hands.

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Thank you Lisahelen I will print out a copy tomorrow to have it ready .. My DR does seem nice and he has referred me so I'm hoping this means he is open to trying to get the right treatment for me.

It's scary to think my future is in the hands of someone else's decision.

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Hi Kellybee,

You did a great job advocating for yourself!

Lisahelen's great pointers should help a lot going forward.

You really said it well when you said "It's really scary to think my future is in the hands of someone else's decision." That sums up succinctly what I and probably so many others on this forum think & feel, too.

Good luck and again, well done! :-)

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Good luck, keep strong and don't worry about making yourself heard about how you feel, as Clive said "its for your life" All best wishes

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