Newly diagnosed

[Emmakana]

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

[MaryF Administrator]

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

[Emmakana in reply to MaryF]

Hi thanks yes I'm in the UK x

[MaryF Administrator in reply to Emmakana]

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