MS & the NHS - wtf…
So. I’m newly diagnosed. My question that I can’t seem to find an answer to is this… what have you got to do to actually get on a DMD? Or I suppose, does anyone know what the neurologists have to actually do…? Since being discharged from hospital, I feel very much like - I’ve been given this diagnosis, but not told how to manage my condition or actually started on any treatment. Im so anxious to start a DMD. I live in perpetual fear of nerve damage and looming permanent damage. I keep being told by the NHS it takes months to get on a DMD. I just don’t understand why?! What is it they’re doing that is taking time or what are we waiting for? Other than something else horrifying to happen… 😞 I’ve tried asking the neurologists and MS nurse. The more I ask the more confused I become. The different answers I get. I sit around getting more worked up about it. Not knowing if my lack of comprehension is the brain fog/MS or just the genuinely contradictory information they seem to give me…. Someone help. I’m so frazzled at this point. #desperatefortreatment #wantmylifeback
morning, when i was told i may i have MS i was the same tokd to go home and see how i was at that point i didn't have enough relapses to qualify for help, 2 weeks later i was hospitalised with bad relapse got lumbar puncture and MRI and confirmed MS. 2 days later the MS specialist came to see me and said i was eligible for DMT and was put on rebif.At that time he told me only 2 newly diagnosed patients a month in the area we live were picked for DMT due to cost and due to my age at time and my kids being small i was eligible. not sure if this is criteria everywhere. could you reach out to the MS doc in your area and ask for a consultation and write all your questions down before you go? i know its hard and you feel frustrated but keep fighting. i have said from day 1 "I have MS it doesn't have me" xxx
I suggest you do your research and decide which DMT you want. I was discouraged originally from getting one but I looked it up decided what I wanted and went in with a proposal. Still took a while but I recommend you do as much as you can yourself and make it as easy as possible for the MS team to get you on something. Also I recommend that you look up dietary and lifestyle changes you can do immediately. The OMS diet has proved useful to me as is a good nights sleep, plenty of rest and supplementing with Vit D.