I spoke to my wonderful Epilepsy nurse last week about everything that has been happening to me and, with the backing of my E neuro she has got my appointment with the ms neuro brought forward by a month so will be going at the end of May. Still a while off but a lot better.
P.S Anyone else have 2 neuros, I’m starting to get confused already!!
Hi Nikkinakkinoo! That’s great that it’s been brought forward!! A month can feel lik e10 years when you are waiting & worrying!! xxxjenxxx
Yes me - and it does cause confusion especially when other agencies want info.However with yours being for two seperate conditions I would want to keep the two especially if they are specialists in their area.
One of the main problems with two is if they wont do anything as protocol is not to change things another consultant has arranged.With epilepsy meds being used extensively in ms it has the potential to come to stalemate so its worth discussing where you stand on this AFTER the neuro has finished looking at you from the ms point of view.
Glad its brought forward for you.
Pip
Thanks
Yes Jen it felt such a long time away but at least I can say its next month now.
Pip I noticed people saying they were on Epilepsy drugs. I take Lamotrigine which I haven’t seen mentioned and its a pretty high dose, I also take clobazam when I need it. I’m not sure I would want to take another one!
I would definitely want to keep the 2, my E neuro is world renowned in her field. She is a grumpy cow but great at what she does
A good epilepsy neuro I agree is golddust…My only bad experience of lamotrigine is when a person I care for always had it in the lamactil form and then to cut costs gps were told to go for the cheaper lamotrigine.Her epilepsy went well and truely haywire until returned to lamactil and back to normal for her.
As for the ms medication wise I would guess there are a number of other ones you could try as and when necessary.
Keep well Pip