Hi All
Just had a phone call from a MS specialist nurse to arrange when he can come see me and talk me through everything and start me off on meds.
He told me to have some questions ready but I dont know what to ask him as I am still in shock about it. I was just wondering was anyone else like this when there nurse came out to see them.
I guess I have got a wweek to think of things I want to know.
Clare
Oooooooooooo! A home visit - you lucky thing!!! A lot of PCTs don’t have that kind of service so it bodes really well for your ongoing support.
If he’s coming to talk to you about meds, then I guess he’s talking about disease modifying drugs (DMDs). The best place to find out about them is the msdecisions website: it gives clear, objective information about the options. Have a look at that and I’m sure you’ll think of loads of questions to ask him. One piece of advice: the sooner you choose, the sooner the prescription gets done and you can get started on whatever DMD you chose. It takes a while to get the funding in place from the PCT and then to get the neuro to sign the prescription, never mind the logistics of actually setting up deliveries etc. That’s not to say that you should rush your decision mind you - make sure you’re happy before you proceed.
Most MS nurses are absolutely lovely - I hope yours is too.
Karen x
Hi Claire I am glad you are being seen by the MS nurse, he/she will be able to answer you fears/concerns, If you think of anything write a list, as when the time comes you may forget. The dtasheets available on this site are great. If you have a look at them,they will inform you questions Mike x
Hi Karen Sorry bout the name change, knew ommat wasn’t right, but didn’t know what Mike x
Hiya as Karen says I would definately look at the msdecisions site as you will have a much clearer idea of which way you want to go DMD wise.
If you have the choice of all the dmd you dont want to be put on one, you need to choose which suits your lifestyle and that you feel comfortable about the side effects. They all have side effects and different storage requirements.
My ms nurse obviously leans towards Rebif,but I knew before I saw her that I really didnt want that.Without prior knowledge I would of gone along with what she suggested.
Take care
Pip