My ms nurse told me about the ‘crap gap’. Being the week leading up to the next injection of Kesimpta. I’ve only had 3 injections so far and with the next one I will be moving onto monthly. Over the past few days I’ve been bombarded with all ms symptoms, whereas before it would be one or two.
Does anyone have any experience of this and does it improve? Or am I to expect to feel worse more often than feeling better? It’s important to avoid relapses but beforehand I was ok for extended periods of time.
My main issue is my legs just go and I can’t walk well and also I get this horrendous headache and a very panicked feeling. I’m finding it hard to leave the house now as I don’t want to experience these outside my house as I always have my toddler with me. I even had the electric shock feeling in my face yesterday whilst in the park and I haven’t experienced that in well over a year
Hiya sunrie,
The electric shock you experienced sounds like Trigeminal neuralgia, and that would explain your headaches as well. Does it hurt to brush/wash your hair? I’ve been on kesimpta since October last year, I’ve experienced an episode of Trigeminal neuralgia last December, and at present I dealing with spasticity in my right leg and spasms. It’s helping with my fatigue levels. I think it take time, as in longer than I’ve been on it! But before I started this medication I’d had four relapses in 10 months and not fully recovered from any of them. If I was you, I would report your concerns to your ms nurses.x
It’s horrendous is it! I’ve had it a few times, first time was when I was 18, thought I was dying! But it just hasn’t happened in over a year so was really down about it happening yesterday in the park. I screamed when it came on as well because it was such a shock
I guess I’m panicking. It is early days, and I could have had a migraine this weekend too as I’m feeling a lot brighter now.
Thank you for your reply it does give me hope! I’m glad to hear you’re feeling much better overall. I don’t think we will ever feel ‘normal’ again but the Kesimpta is meant to be anti inflammatory so it should improve symptoms. But the damage has been done also so we are never fully cleared of them either. Just not nice when they all come at once in full force. I hope you continue to feel improvement and are relapse free x
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It’s a horrible pain, there are medications you can take for Trigeminal neuralgia carbamazepine. Thank you for your kind words. We have to learn to adjust to the new normal and 
this continues to slow things down. x
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If it is trigeminal neuralgia, then b12 might help.
“It is important to keep the body healthy to help manage the pain-pathways. Vitamin B Complex, especially vitamin B12, has some evidence in helping regulate nerve function and may be beneficial.”
Tips For Dealing With TN - TNA
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Thank you for your replies they have been very helpful!
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