Newly diagnosed

Hi I'm newly diagnosed an have spent a recent 7 week stay in hospital due to another illness idiopathic intracranial hypertension and having shunt surgery, but while in there I was given an injection everyday of anticoagulant and after about 3 weeks on this myself an my family noticed a massive improvement on my cognitive problems and generally feeling better in myself I'm now at home an my gp has given me some of the injections to do at home but has said she can only do this temporally . I'm on the waiting list to see a hemotologist I'm just worried that they won't carry on with this treatment, what are others experience with this please x

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  • Hi are you in the UK? welcome by the way, this is the charity website which carries our recommended specialists, you could show it to them. hughes-syndrome.org/self-he...

    If not in the UK I will still try and help you. MaryF

  • Hi thanks yes I'm in the UK x

  • ok so recommended specialists above, and please take a look around the whole website, feel free to email it to your specialist's secretary and your GP. MaryF

  • The reason your GP has told you she can only give you your heparin injection temporarily is because of cost! They are far more expensive than warfarin for instance and I suspect she will make a move to get you moved onto warfarin soon.

    Of course if you do not want to do this or if there is a medical reason for not wanting to take warfarin, then you will have to lobby your GP and possibly your local CCG in order to get the injections permanently or at least until you have seen the hematologist who you may be able to get on your side and write to the GP recommending the treatment. The GP will then be in a tight spot if she refuses to prescribe.

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