My legs seem to be getting weaker by the day ! I’ve just walked my dogs and the same walk we always do is taking longer and longer each day . My legs feel so weak , they ache so much . I feel like I can’t even get up now they are all tingly and ache and heavy . The spasms in them are so painful . I feel very dizzy likeive just got off of one of those flat escalators at an airport . I don’t want to ring my doctors as my doc is away for 2 weeks and I just feel like the other one brushes everything I say off , I don’t feel comfortable talking to her . I suppose I could let the neuro sec know . Just having one of those days where I feel like there’s no one to help me and it’s best to hide under the duvet . It just seems since I’ve been having all my symptoms since April I have got worse and worse . Sorry for moaning Sam x
You know on here its not moaning.
I checked your profile and it doesnt show if you are on amitriptyline or baclofen.
My first bad relapse started with legs just like yours and I would happily of ripped them off if possible.
Baclofen gave me almost instant relief and the amitriptyline taken at 8pm meant I could go to bed at 10 and fall straight to sleep rather than tossing and turning not knowing what to do with my legs.
I would be beating down the neuros door if you cant go to the gp as it is not something you need to live with,these symptoms are easily treatable.
Hope you can get something sorted
Pip
Hi Sam
You really are having a bad time at the moment arent you? Seems to me that you are more than entitled to moan about it!
My symptoms started in April too. I had Optic Neuritis first, then I had a tremor, then the other eye had ON, and then the symptoms really started to kick in… back spasms, arms and legs feel so heavy and hurt all the time, ah many other things as well.
The first GP didnt listen to me at all, but the next one I saw in the same practice is absolutely brilliant… she takes her time with her patients, offers meds to help, and just listens to me. I always cry in her office as she is so lovely! And Im not an emotional person.
Please go to see another GP in the practice - one who will listen, and ask for meds to help. You may have to see a couple of rubbish GPs though in order to find a great one! The other option is to contact your neuro and find out if you can get seen sooner?
I really hope you feel better soon Sam, and moan away as this is what we are all here for - to listen to each other, advise where we can, and to help each other.
Take care of yourself and listen to your body - do things when you can, and rest up when you need to.
Paula xx
Hi Pip I’m on amitriptyline 30mg Pregabalin 600 mg The ami really helps me sleep as well . I’m waiting for the doctor to ring back. My little girl is begging me to take her out but I just can’t today . What do any of you use to help walking when your balance is bad ? I have 1 crutch here maybe that will help. Sam x
Just read your post , thanks Paula xxx
I was diagnosed last month. I was pleased to have a name to my illnes as I thought I was going crazy! Only thing I have to have a lumber puncture and am dreading it? I have been described Baclofen which has helped with the spasms but still have very weak legs.
I’d second the tip to ask for baclofen - it is excellent for spasms in most cases. Do you think one of the other GPs would help if they saw the spasms in action? Worth a try?
If they insist on neuro approval, then phoning the secretary would be a good move.
Try both??
The crutch may help with your balance. Practice first though! Learn how to turn around, get up / sit down, go up and down kerbs, etc so that the crutch isn’t more of a hindrance than a help. You could always turn it into a game with your little girl?!
Karen x
Well my gp has rang . He thinks I have vertigo and that I need to cut my Pregabalin down to 300mg . About my legs he said if they are no better in the next day or two then go to a&e as it might be to do with my slipped disc in my neck . I just feel so weak at the moment and lack of bladder control is so embarrassing . My hubby has just popped home for lunch abd after seeing me upset has left a ( very loud !) message on the neuros sec answer phone saying he is not happy that no one gets back to me etc . Never used a crutch before ,so yes Karen could turn it into a game with my daughter lol I think I’m going to have a duvet day today , feel exhausted and legs are now burning as well , these symptoms are so not fun ! Lol Sam xx