Hi everyone, this is only my second post.
I’ve just been referred to neurology and my appointment is in July.
I’ve been unwell for three years but its been impossible to see a GP face to face because of covid, until last Friday. My GP had previously put my symptoms down to long covid, as I caught it three years ago next month, but my symptoms have worsened and I have new ones now. For the last few weeks I’ve had double vision, I had an eye test last summer and just needed reading glasses. The muscles in both legs and firing constantly, 24/7, it looks like my legs are pregnant, like babies kicking. This only started a few weeks ago and makes my toes twitch too. It’s so painful, and bizarre to watch. I can’t feel most of my feet either. I had blood tests and my platelets are low.
Does this make sense to anyone? Did anyone get this before diagnosis?
I can hardly walk, incredibly unsteady on my feet and have to use a mobility scooter to go out anywhere. I have awful vertigo and am permanently exhausted.
My sister has MS, was diagnosed five years ago.
Five more months until my appointment, in the meantime the GP has put me on Gabapentin for the nerve pain.
I hope everyone is as well as they can be.
Did the muscle twitching start after taking the gabapentin?
Hi Ziola, no a couple of weeks beforehand. Ive had chronic fatigue for three years and problems with my feet feeling dead for probably at least ten years, but sporadically. But now I can’t feel them all the time and my vision suddenly went from just needing reading glasses last Summer to double vision in the last three months or so. The legs, it’s crazy to watch. It’s both of them and my toes twitch and jerk and I can’t even feel them. It’s like there’s an electrical storm going on, and it’s spreading upwards. I went to the GP then, face to face (first time I’ve been able to get a face to face appointment in three years because of covid restrictions) and she put me on Gabapentin and referred me to neurology. I hobbled into the consultation room after leaving my mobility scooter outside her door. My legs shake constantly, walking is now near on impossible. My hands shake too.
Sorry if I’m not clear, it’s hard to concentrate sometimes.
I’m 52 by the way, female and have kids at home so life is difficult.
Thank you for your reply.
So not gabapentin then! It is quite a wait for your neurology appointment, but that is the way it is at the moment with the NHS, and not easy for those waiting. But at least you have been referred, and hopefully that will give you answers in due course. If it continues to get worse in the meantime, do go back to your GP and see if the neurology appointment can be brought sooner.
I had no idea GPs could prescribe gabapentin, I’ve been waiting for neurology for almost a year with no appointment in sight and I’ve been left in (at times) very severe pain. I’ve seen multiple GPs and a consultant rheumatologist, not one of them has prescribed me anything.
I don’t get the spasms quite as bad as you described but I do sometimes get very twitchy muscles, especially my left eye, left pectoral muscle and also my thighs. Even though it’s far away, I hope you get the help you need at your appointment.
Hi Ziola, thank you. My pain increased over the last couple of days so the GP has added amitriptyline to take at night as I can’t sleep with the pain. She’s also emailed neurology and asked for me to be seen earlier.
Thank you for your reply.
Hi Joe, I’m sorry you’ve been left in limbo. My legs, it’s the most bizarre thing to watch and it’s 24/7, crippling pain with it and it looks like an electrical storm all over both of them.
Yes, GP’s can prescribe nerve painkillers. Mine added amitriptyline to the gabapentin yesterday. My son picked it up today, that’s just to take at night.
I hope you get some help and answers soon. Thank you for your reply.