Diagnosed with RRMS last week, scheduling Tyrabi ?sp infusion. Reading through the posts I feel lost in a language I don’t understand. It’s all too much to handle at one time.
A new diagnosis can be very overwhelming, when you see something you don't understand, I would encourage you to ask! Everyone on this forum is very helpful. Part of a new diagnosis is taking information in a little at a time, we have a program called Knowledge is Power that is a great place to start with MS education. You can access this information at this link: https://www.nationalmssociety.org/Chapters/WIG/Calendar/Programs/Knowledge-Is-Power-(KIP)
I would also suggest reaching out to the National MS Society's MS Navigators. We can be reached at 1-800-344-4867, Monday-Friday from 9am to 7pm Eastern time. We are here to offer information and support as you cope with your new diagnosis.
MS Navigator Ashley
Hi, buckeyecurt. I felt the same way. I originally thought knowledge was power, with MS sometimes it's not the case. MS is different for everyone and with so many experiences and symptoms, there is a chance it will never apply to you. For example, I was convinced I would go blind. I use to practice. I freaked myself out. It has been 3 years since my diagnosis and so far, no eye issues. If you feel the need to do research, make it about what you are experiencing. I always read the conversations on here, but to be honest, I can't relate to most. The first year is the hardest, so much unknown. I live a very normal life 95 percent of the time. Stress is my big trigger. People always say " How can you control your stress?" Easy, because if I don't, I get sick. You can start by asking yourself what you can do about it. If the answer is nothing, you have to let it go.
Hi Curt...totally get and experience that!!!....it takes TIME...Things I Must Earn....grrr...hate that useful saying especially when it applies to me. Been almost a year, and not to sound discouraging, it can still feel that way many moments of many days.
For me, i'm practicing really & truly living one unpredictable moment at a time...hard stuff while on this newly diagnosed hurry up and wait rollercoaster ride...hey, at least you're NOT the only one, we are all "special" in our own unique and insanely crazy ways!! Great to hear from you here again...another case of the we need YOU as much as you need US thing. Just reading and in my case replying, when it moves me, to these posts gives me knowledge as i get through many moments almost daily doing it...at least for those moments there is FORWARD baby step motion and i'm not inside that bad neighborhood inside my own head all by myself...ya gotta laugh, way better than crying in my book. Although a good cry is refreshing every now and again!
You may want to consider joining a support group in your area(if available). It is a great beginning, being in a room with others with ms, seeing it first hand and communicating with others there. Even though I could barely hold myself up it was the greatest memory I have of my beginning with ms, the National MS Society and the support groups, they gave me the foundation for a life with ms.
I was diagnosed in late July of this year after a brain MRI showed lots of lesions and a spinal tap came back with highly elevated protein 'o' bands. It's scary and confusing at first but you're never alone, we're always here for you. I agree with the previous post, find if possible a support group in your area as that could help if that's an option for you. Also while everyone's MS is different by reading through forum posts on here and profiles on here you can perhaps find someone with similiar symptoms to your own to talk with.