MS Hug and bad legs.
Good morning I was diagnosed with RRMS june 2022, I've had the MS hug since November 2021. It started waking me up with abdominal spasms and the only way I could and still can deal with this is to sleep in a sitting up position, not ideal for sleep. For about 13 months this was only happening in the early hours around 3 am, now it's with me all day, I'm on amitriptyline 30mg and was on gabapentin, nothing is working. I have a lesion on my spinal cord which is responsible for this. Does anyone have any ideas how I can treat this please. I also have bad legs. I'll walk ok for about 30/40 metres then hip and knee joints start giving way. My consultant said this would get better by the spring but its actually gotten worse. I'm waking up more often like this now. Consultant said my score is 1.5 anyone got anything similar. Thank you in advance.
May I ask what you mean by your score is 1.5? I've never heard this score thing from my consultant or ms nurses 😕
Hi It's your EDSS disability score. It ranges from 0 to 10. The higher the score the more disability your have. Your consultant will do it everytime you see them. Unfortunately the 2 times I've seen mine I've had a good day and doesn't show all the bad days that I normally have.