Hello, I have been having a crap few weeks with horrible cramp like feelings in my arms with altered grip/power in my hands.
I had mri of my neck to rule out lesions which came back normal.
I have been taking an increased dose of amitryptiline which initially felt like it was helping alongside taking regular paracetamol and ibuprofen but now i feel like it’s not helping at all.
I have an appointment with the consultant coming up soon to discuss if I should try something other than amitryptiline like gabapentin.
I was wondering if anyone else suffers from these symptoms and if so what helps?
I don’t understand if I don’t have any lesions in my neck (which the ms nurse said is the likely cause of these symptoms) why am I having these symptoms?
I’ve only been diagnosed about 3 years with RRMS.
Thanks xx
Unfortunately, damage is going on all the time and sounds like case of smouldering MS.
Getting worse - by Gavin Giovannoni - Prof G’s MS-Selfie (substack.com)
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Thanks for taking time to reply and for the information, it was an interesting read.
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I’d be scunnered too. Are you on a disease modifying treatment? My personal experience is that the sooner person gets on one of those the better.
Left hand grip was one of the first things that took me to the doc, pre dx, and it does bring back memories! I didn’t have an MRI at the time, but the neurologist drew me a picture of where he knew the lesion would be on my C-spine. He was right, as it turned out. It got a lot better as the relapse faded and I hope you find the same.
Hello alison, I’m not on any DMDs. My cervical neck mri scan was clear, no lesions.
I’ve got an appointment with the consultant this week to discuss things.
Is this just part of having MS? Can you have a relapse without new lesions?
Im hoping I’ll start to feel back to my normal self soon x
So I spoke to Consultant who reassured me that my neck scan was clear and that my MS isn’t active at present. He advised me to keep taking an increased dose of amitryptiline to manage the pain.
Has anyone experienced similar when disease isn’t active but still have symptoms?
I agree with Whammel about the fact that MS is damaging us all the time. Whammel’s link is very good. I’m not sure where that leaves you re the ‘your MS isn’t active’ line. Maybe it’s just that it’s complicated.
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If you can stand another link, this should help explain. The author is the Professor of Neurology at Barts and an MS specialist.
“Firstly, you do not have to have an active MRI scan to tell if you are having a relapse. Please note the current definition of what is a relapse does not require an MRI to make and/or confirm the diagnosis. Many relapses are due to lesions that are small and below the threshold of detection of the current MRI scanners, which is about 3-4mm in size. Relapse can also be due to disease activity in the grey matter, which are areas of the brain and spinal cord that are not well visualised using current diagnostic scanners and standard MRI protocols”.
Case study: am I having a relapse? - by Gavin Giovannoni (substack.com)
Just trust the evidence of what you body tells you and you won’t go far wrong.
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It all makes perfect sense unfortunately. Thanks for being the voice of reason if not hope. M
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