Feel Terrible

Hi Folks,

Sorry about this but I feel awful. On Monday I had to have my usual 3 monthly infusion for AS. On Tuesday I went back to the hospital to see my rhumy regarding my Ankylosing Spondylitis and Lupus. Wednesday visited my sister and I suddenly started having violent myoclonic jerks, my arms, legs and trunk were flying all over the place. I ended up on her settee sound asleep. I felt so embarrassed by it, in fact although she knows I have MS she has never seen it quite like that. I think it frightened her which must have been awful for her. I still don’t feel right, and have decided that I don’t like this desease.

Sorry for my little rant.

Janet x

Hi Janet, sending big hugs your way. Having a pretty rubbish week myself and still don’t know if i’ve got this rubbish disease. Can’t really offer anything other than sympathy and i hope you feel better soon.

Try and have a good nights!!! Take care Sonia xx

Thanks Sonia, sorry to hear your weeks no better than mine. Hope tomorrow is a better day for you.

Janet x x

Hugs Janet…

It is not easy for anyone with MS.Often we dont know when they spasms,jerks and stiffness are going to arrive.It can be frightening for ourselves and gosh for those who have not seen these type of things before,it must be a shock to them.

Tomorrow is another day and hopefully you will better.

Hugs Sonic.

I know how you feel I realy do…

I wish you both the best and hope you have some respite from the MS soon.

Hi Janet

hope you feel better very soon.


jaki xx

Hi Janet - how horrid for you, big big hugs, do you think you are you going into a relapse? I was doing that in A&E at Christmas with everybody staring at ‘the jerky woman over there’

Despite it being embarrassing for you and a shock for your sister I do think it’s good longterm that she has witnessed something of the truth of the disease.

Please let us know how you are today -


Hi Janet, just wanted to say that I hope you feel a bit better soon. Thinking about you. Cheryl:-)

There’s nothing quite like having what looks a bit like mini-epileptic fits to scare the xxxxx out of relations :frowning:

I have the same thing, but I’ve found that a combination of baclofen and pregabalin has reduced them loads. Please do talk to your nurse about anything that might help if they keep coming.

And ((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))

I hope today’s a better day.

Karen x

Sorry you had such a rubbish day Janet. I hope today is a lot better for you. It must have been unsettling for your sister to see your myoclonic jerks but maybe it will help her to appreciate what your life can be like and perhaps she will empathise more with your situation. Thinking of you, Teresa xx

Hi Sonia, Jellybean, Jaki, deb, Cheryl, Karren and Teresa,

Thanks ever so much for your comforting words. I’m still waiting to see my neuro re: drugs as at moment I’m only on Keppra and Clonazepam which had been working up till now. I feel so drained and worn out and defo no energy. Hope it’s not the beginning of another relapse.

I think you made a good point re: my sister and realising exactly how it can affect me, she was so quick to lay me down and kept everyone else away from me, even my hubby.

Haven’t had any more big jerks since, so hoping it was a one off as I’d pushed myself to far, fingers crossed.

Thanks again, you are all so kind and supportive I appreciate it.

Janet x x