Went to see my MS Nurse today and she wants to refer me to Stoke hospital to sort out DMD.
Iv got such mixed emotions and it was all so much to take in. I dont know how I should be feeling right now but I just feel numb.
She mentioned one option of me going to hosptial once a month to have the drug but having to be tested for something first that may trigger a brain infection. So much was said that half of it has disappeared from my head.
If anyone could help me understand this a bit better it would be really helpful.
It sounds like she was talking about Tysabri. Which is given once a month by infusion. The test is for the JCV virus, if you are positive then after 2 years of it you are more at risk of getting something called PML (progressive multifocal leukoencephalopathy) which can be quite serious but is not enough to stop many of us undergoing the treatment. Really its about how you and your neurologist perceive the risk if you are JCV positive. I am and I’m just coming up for my 3rd infusion. This is the best i’ve felt in 18 months +, so to me its a no-brainer. There’s a really good tysabri uk closed group on Facebook where you can find loads more info ! Good luck researching x
It’s such a whirlwind of information and difficult decisions when it comes to DMD’s. I am sorry but I can’t advse you on what the MS nurse meant by the test you need doing, all I can offer is that my thoughts are with you and I hope it all works out well for you xx
Just a thought, did your MS nurse give you a leaflet on the different DMD’s that are available? I was given one when I was called in to clinic about DMD’s. It helped a little but the better help was the website msdecisions.org.uk it has a tool to help understand the drawbacks and benefits of the available treatments. It helped me make my choice.
I am to recieve my first delivery of meds on Friday, on Tuesday I have a clinic appointment with an MS nurse to teach me how to self inject. It’s all been a confusing and troubled time for me too… often the informtion has seemed to go over my head too.
Thanks both. She gave me a ms trust dmd book which is useful but will have a look at that site and facebook page. I dont like the idea of self injecting (iv seen my mom do it for 13 years). I think it all just came as a shock as i only went to see her for a bit of help with my PIP form so wasnt expecting to leave with such a big thing to think about and have only started pregabalin today. Nothing like being caught off guard haha. Your help is really appreciated xx