Forum

is this normal

Just recently been told i have MS

The GP has put me on Gabapentin, which i will admit has taken away the stiffness in my leg and foot, but now i have a problem walking as my leg feel like jelly and i don’t trust it not to give way

have others experienced this ?

hi

i have had times when i don’t trust my legs at all.

just before my dx i fell flat on my face in the pub beer garden. then fell and broke my big toe.

i bought a walking stick but no longer use it.

are you seeing a physiotherapist? if not ask your ms nurse to refer you to one. he/she will be able to advise.

carole x

Hi

I also have times when I dont trust me legs - After one bad fall at the school gates I brought a fold up walking stick which I keep in my bag - must admit have only used it a couple of times since but it gives me confidence knowing it is in my bag if required.

Hi Cardo,

I have just started taking Gabapentin, still on a low dose, increasing it slowly but I don’t feel as steady as I did when I had the pain. I’m going to stick with it and see what happens but I don’t feel as though I can walk far and feel extremely tired. What dose are you taking? I have to slowly build mine up to 300 mg per day. Do let me know how you get on. PM me if you like. I use a walking stick at home and a rollator outside which I feel steadier with.

Janet

x

Hi Guys,

I’m not diagnosed but due to extreme pain was taking gaba 900mg 3 times a day plus other stuff.

Am delighted to tell you the pain has really receded in the last couple of weeks and I have managed to reduce the Gaba to 500mg 3 times a day.

However, I still have the jelly legs really badly. I had begun to wonder if it was due to high volume of meds I was taking, but it would seem not. The more I use them, the jellier they get…its not nice not trusting the old legs to keep you up.

I have a scooter which saves my energy for the fun things, I get exhausted fairly easily and nap at will and still sleep well at night. I think the night sleeping is due to the Amitryptyline which I refuse to give up :slight_smile:

Hoping to get back to work soon, but wondering how I will stay awake???

It’s important to get the right balance between fewer spasms & spasticity and weakness. If you’re on a low dose of gabapentin and it isn’t working for you, then you could ask to switch to something else. If you’re on a high dose, then you could try a lower dose. Gabapentin isn’t the standard med for spasticity mind you - baclofen is more normally prescribed - but it does have the benefit of also treating neuropathic pain whereas baclofen doesn’t.

Maybe give your MS nurse a call and talk about the options?

Karen x

Once again its helpfull to ask people who understand :slight_smile:

The more i think about it i feel it might be that i’m walking differently now my leg is more relaxed but haven’t noticed it.

Its just when you first hear those words you have MS, there’s no checklist as it seems to affect everyone differently

Just needed to feel there were others out there going through this and i’m not alone