Thanks for having me i am lee diagnosed in 2018 with RR but has progressed to secondary within the two years. Have first ever meeting with my neurologist this week since being diagnozed crazy i know but have been blown off by a few as i wont take their medication
I havent seen an m.s nurse at al
And i am feeling really lonely and alone i have a great family but they dont really understand and i have been stuck in doors now for ages as many of you. I just wanted to chat and you know get some understanding. support advice. I really am finding things really difficult i am only three yrs in and i am tired really tired my partner gets upset when i talk like this but its the truth i dont know if i have the energy to be in pain and feeling (removed by moderator) all day everyday
How does everyone do it i would luv to know where you draw your energy from
Hi, I get alot of nerve pain all the time but take cannabis which is amazing I wouldn’t be able to with out it, but I have started doing yoga/Pilates everyday and it as really helped with pain and my walking is so much better, exercise as always helped me with fatigue, I’m the same as you because I don’t want any medication the neurologist does not want to see me, it is hard every day but I find if I try and do even little things I love every day I feel like I have achieved some thing, I even write a list of things I want to do in the day but not anything to big like run a marathon
Hi Lee
Welcome to the club! Diagnosis is a big thing to come to terms with, especially without support and when the ms has been active. It was so aggressive with me in the beginning, and went from walking to needing a wheelchair within 18 months. I understand the hesitancy about taking any meds, what with the risk of side effects and simply wanting to stay ‘clean’. But things were becoming too hard, and I knew I needed help. So I started with a few different ones, and things stabilised then. So I wouldn’t rule it out.
For emotional support, see if there’s a local MS Society branch or MS Therapy Centre near you, where you can meet with others who will get it (I remember the first time I heard another person with ms talking about it, and it was like I’d been in a foreign country and I was hearing an Brit talking!) Also ask your GP for a referral to a counsellor, just for someone to talk to about everything you’re feeling. And come on here as much as you need to
