Have you ever sacked your MS team, and can you?
Hello,
This is my first time here, although I was diagnosed with MS in 2016.
I have rarely seen my neurologist - just twice in 7 years - and I have lost faith in their ability to help. I feel that my relationship is so poor with the MS team that I am thinking about leaving their care, such as it is.
Has anyone got experience of this and just gone it alone? I don't want disease modifying therapies, but occasionally need steroids to help get my strength back if my legs get weak but these are now being denied unless I am in a wheelchair, which I'm not. I'm just wondering what the options are. Thanks for any help you can offer.
I had a rough time in this one particular MS center that I've been in since I moved back to Jersey nurses that acted like they were doctors phone calls not being picked up messages not being forwarded test results that weren't forwarded to the particular doctors that needed it and I pretty much told them let me find a nice way to do it because I want to curse here but I really don't want to curse but I told them to off themselves if you get my drift and I went to a different MS center which happens to be closer to my house and I have to tell you I am so glad I did because I got more results in the short amount of time that I have been with them now then I have for all the years I was at that other center if you are not comfortable with the people that are supposed to be taken care of you then you're not with the right doctors and you have every right to change and go where you are more comfortable
Gosh, that's a very similar experience to me. I'm sorry this happened to you. Very similar: poor communication, setting up appointments which they don't notify me about, blocking medication, chasing 'urgent' test results from January. I despair. You're right, I need to feel comfortable with the people taking care of me and I just don't. Thanks for replying.