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MRI Results

I am on the Star MS Trial and I had my six month MRI last week which showed no new or activate lesions, despite having a clinical relapse in May. I’ve been at Kesimpta since March. Although I was happy that there were no new or active lesions and the Kesimpta seems to be working…I was also a little gutted because if the MRI had showed activity or new lesions then I would be offered a stem cell transplant. It’s like 50% of me wants Kesimpta to work and keep me stable, whilst 50% of me, wants to fail on it, so that I can have a stem cell transplant. I had my first relapse in August last year, then one in November. I was diagnosed in December and then I had another relapse in May. I’m just in the process of trying to restart my business from scratch. There is no way I could work for anyone at the moment because I get so tired in the day and I’m in constant pain which makes it hard for me to focus. Even sitting at a desk is painful. My daughter was laughing at me yesterday because I was trying to set up my website and within about an hour and a half, she found me sitting in three different rooms in the house, just trying to get comfortable 😂 It’s very hard for me to feel much straight at the moment, because I feel like I’m in a constant state of limbo for the next year and a half to see if I fail and Kesimpta and get offered the transplant, or if I get to the end of two years and I’m offered a transplant anyway, or if I get to the end of two years, I am still stable and don’t get offered the transplant. Bear in mind all this is extremely new to me, and before December of last year, I didn’t even know what MS was. Now it’s all I think about, especially since I lost my last client in June, and I’ve been sat in the house since then with my thoughts. I have an ultrasound on my shoulder tomorrow because it is causing extreme pain bought it is it considered to be a MS related. Maybe I’ll feel happier when that is sorted. Then I’ve just got my constant back pain to work out. My husband is working long hours to cover the fact that I’m no longer working because I’m only getting £274 PIP each month. I went to the doctors a couple of months ago after waiting six weeks for my appointment. I wanted to go on antidepressants but the doctor said that I wasn’t depressed. I was just just miserable because I was in pain so they told me to up by gabapentin to an extra tablet a day, which I did absolutely nothing 😭 I feel like no one listens to me. I’ve put on about a stone and a half since Christmas because I can’t move my left arm and my back is agony. Walking hurts. Sitting hurts. Lying down hurts. I keep trying to do a bit of exercise but it really hurts.

Hi @chimum. I just wanted you to know that we hear you and that I am so sorry to hear you are having such a hard time. I wonder if gentle stretches would help? I have struggled a bit with my legs not working so well and found some stretching exercises for MS on YouTube. They did help my legs and in turn that has put less stress on my back. Most of all I have found swimming helps the stiffness and pain, and the exercise cheers me up. Wishing you all the best with the ultrasound and everything else. x


@Murray Thank you. I tried some super easy beginner Pilates yesterday and it nearly killed me 😂