Hi, I was dx a year ago and I am seeing my neuro for first time since dx. I just had a letter confirming ms. Not a type. I’ve survived this year. Found friends come and go. I used to walk for miles and play violin. All in the past now. I’ve had symptoms come and go and some stay with me always. I take pregabalin but I was never offered dmds. I have no ms nurse. Not one in my area. I don’t bother my dr anymore for things like hot water down my leg or other weird stuff. I have been told so often it could be ms or may be unrelated. Didn’t go to dr with vertigo. Couldn’t stand up for a couple of days but once I could there seemed little point in seeing dr. Should I ask about dmds. Anyone else not on dmds? I really don’t want to get worse. Thanks. Lynn
Hi Lynn - the appointment with your neuro is your opportunity to ask questions. I see my neuro once a year but as I am on tysabri I see the ms nurse once a month for my infusion. Like you I didn’t go to the gp with symptoms as he would always say that he didn’t know anything about ms and as I had a consultant he couldn’t prescribe. I suggest you make a list of symptoms you have had during the last 12 months as they will help the consultant get an idea as to what is going on. You can also ask about your diagnosis and what it means ie is it rrms, spms etc. DMD’s are prescribed only if you meet the NICE criteria and therefore it is important to be able to ascertain what symptoms you have had or are having. DMD’s are a personal thing - I started taking nothing as don’t like drug intervention, to going onto copaxone but still having relapses to going onto tysabri. My attitude changed when my disability got worse and I wanted to stop it/slow it down.
Your neuro will advise - but have a list of questions ready - there is nothing worse than knowing you won’t see them for another year and you forgot to ask them something!
Hope you find the appointment useful and you get some answers.
Helen