I have been diagnosed with MS for 18 months (remitting relapsing) and the last five weeks I have had muscle twitching! This has me really worried about motor neurone disease!! Seeing neurologist in 3 weeks!! Seen 4 different drs and they have tried to reassure me but it hasn't!! They all said it would be highly rare. Spoke to ms nurse and also said it would be extremely rare. Does anyone else have twitches. Grateful for any replies
I have previously been on Baclofen, taking it the recommended 3 times a day.
It proved to be problematic, with some unwanted side effects. Side effects I couldn't live with.
Wind on a few years and I at the point I really do need something for the spasticity and it is affecting my sleep and making the fatigue much worse.
I have spoken with my MS nurse and she has suggested taking Baclofen on an as needed basis rather then religiously taking it 3 times a day.
Has any one else tired this and has it worked?
Has it helped get round the side effects problem?
I must admit I am a bit sceptical, but prepared to give it a go, nothing to lose by it.
I had be persuaded to give Baclofen another go. I tried it in 2014 and didn't get on with it. Since then I have moved, different health authority, different MS nurse.
Since pregabalin didn't cause the same problems when i was previously on it, I figured that perhaps baclofen would be better behaved.
I have had quite an unpleasant month or so, with no sign of me adapting to it. Admittedly it did have some benefits. It did seem to take a bit of the spasticity from my legs, letting me sleep a bit better. Though if any thing I became more tired.
And dizzy. I suffer from dizziness as it is, but this is getting beyond a joke.
It also seemed to have a positive effect on a bit of ED that was beginning to occur.
Even allowing for those two benefits, it really has diminished my quality of life.
So I have decided to stop with the baclofen and hopefully regain some of the energy and perhaps reset back to how things were a few months ago.
I am expecting a bit of a backlash, but hopefully not too severe or long lasting.
If anyone is considering having a Baclofen pump implanted, I am on my second pump after 6 years on the first one. I can tell you all my experiences - the good and the bad and the ugly - which might help you make the best decision decision
I tend to suffer from atypical TN which is bad enough as it is but yesterday, whilst out shopping, I developed one huge whopping headache. On the way home, I wondered if it wasn't a migraine, something I've not had for decades (used to get a lot of them as a teenager, without aura).
When I got home, the headache was worse still, pretty acute, and both my legs and arms started to intensely and deeply ache, including my feet and hands. I've not had this before, and certainly not to this degree - except once, 10 yrs ago (before DX) when I woke with such painful legs which I couldn't move for the pain and phoned emergency doc who didn't know what it was, and which was later put down to MS.
My entire body from head to toe felt wracked with pain. It was all too much for me, despite being used to pain, and I ended up crying for hours - not like me!
I've still got it today, not quite as severe but still pretty awful.
Has anybody ever had a headache or migraine together with severe limb aching? Or, can a bad headache or migraine provoke such pain or aching in legs and arms in us MSers? It's not something I've yet come across in MSers.
PS - please don't tell me to ask my GP... I've had one doctor in that surgery scoff and laugh their head off at me about severe head pains (before DX but which eventually led to it), and I'm not over the moon about current GP for a variety of reasons. Anyway, it might all be gone tomorrow! (with any luck...)
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