Thanks for the reply He really is just so horrible when I was having the attack of trigeminal neuralgia concerned it was a stroke (still not out of the woods on that one yet as I have a clotting disorder and have suffered serious dvt’s in past and a pulmonary embolism all tests negative for clotting so far) He actually hung up on me I was in so much agony part way through the call I could no longer speak He told me if I couldn’t pull myself together he would hang up! which he did He rang back 3 times after that over the course of an hour and spoke to my Husband with the comment “can she speak yet” after the 4th call my husband decided to call an amubulance and i was taken in on flashing lights for brain scan which did not detect a clot
I’m not surprised you’re at you wits’ end - I would be too! Of course you need a referral. Priority one is to get that pain under control however, so I think you should take the GP’s advice on that one - carbamazepine’s a good drug. Chances are, a neurologist would prescribe the same, but that might take time and you need something now. I am at a loss what to suggest about you so re a specialist referral, though. I hope others have some good ideas for you.
Thanks Alison The pain has gone 48hrs on anticoagulants and it went away but only have enough left for 10days I have spoken to the Trigeminal society who have assured me anticoagulants would not relieve the pain of TN so that’s why I want the diagnosis of TN confirmed by a neurologist The hospital outpatient clinic cant properly make that diagnosis all they can tell me is if I have had a clot or not and have told me to contact the GP
I know it can be difficult but make a fuss. Jump up and down. Become a nuisance . Make it the easier option to give you the referral. Request a written reason for refusal, which can then be part of an audit trail. There might be a very good reason for the refusal, but this needs to be clearly explained to you, and you should be able to get a suitably qualified medical professional to validate/ refute this reason.
The urgency comes from the potential consequence of not addressing issues while there might be time to avoid long term issues.
Sounds like my old GP, who never did call back!. Wasn’t an MS.issue, which was eventually picked up on by a locum! You have my sympathy, very difficult if you are unable to access a different GP I was so pleased to move house (bit drastic!) just gutted when the new one turned out to be the son…to be fair he is really good! Hope you are getting some help now.
Hi mully, that is really bad,cos it’s through a neurologist that you would be assigned to an MS nurse, who would give you advice at any time!
A customer at boots , when I had an issue with not getting any more physio, told me to tell the gp that I’d have to get in touch with CARE COMMISSIONER GROUP. Apparently they don’t like that. His wife who was there at the time said they really helped her!
I didn’t end up needing to do that so have no experience of this site myself!