Hi all,
My name is Char, I am 42 years old, live in the US, I live alone. I stumbled across this website as I was researching my new diagnosis of RRMS.
I woke up one morning and had lost the site in my right eye. I have since been hospitalized and scanned which found lesions on my brain and my cervical spine.
Today I am struggling with anxiety. My first infusion is next week (Ocrevus). I have a bad fear of needles/injections/IVs/anything metal and stabbing that goes into my skin and that isn’t helping my anxiety.
My boyfriend is a narcissist; incapable of empathy, not interested in listening to/ supporting me, minimizing this disease. I feel alone, treading water until I have a really good long cry. I am also angry, at my symptoms, the lack of support from my boyfriend, the cost of all this, at my doctors (because I can’t accept this diagnosis).
Anyway, that is my introduction. I am sorry for my negativity/honesty but we all must experience this at some point? I am tired of being told to stay positive and would rather just be realistic. Is this that I’m saying normal thoughts for newly diagnosed patients?
You will see me lurking on the message boards. Thank you for reading and I am glad I have found this group. Take good care everyone.
-char
My RRMS arrived out of nowhere with a bang too, although it was a few months before formal dx for me, so I had a little more space than you to get my head around things. That sounds really tough.
I am sorry about your dx, but glad that you are starting a highly-effective treatment so promptly. The speed will bring a wry smile to your British readers.
If your boyfriend’s no use, best to find that out now. A life-changing dx sure does sort the men from the boys.
Good luck with your treatment.
p.s. Your anxiety, anger etc are, I would say, completely normal. You’re not doing anything wrong: it IS all rotten news, and the shock and confusion of the early days are not fun. But most of us find that something not far from normality does reassert itself sooner than you think - there’s work to do, and bills to pay and the old and young to care for, and life goes on and that is helpful. Hang in in there.
Hi there i was diagnosed 4 years ago. Im 34 now. I have two young children amd a husband. He says he gets it but no one does. No one sees the vertigo i get the fatigue the flu like symptoms. Its so frustrating because theres so much i want to do but some days i just cant . I still cant get my head around it to be honest. I just cant believe this is happening!! Optic neuritis was my first symptom. My anxiety is sky high which doesnt help, but it will be because i feel so crap and i have ms. I dont no anyone with it either. Feel so alone woth it. My nurse is no help xx