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do they listen to us

Hello…Im on tysabri over a year now and im still the same.Can just about walk on flat ground.Met neuro last week telling her that my main symptom is spasticity and is ruining my bit of a life but she just brushed it aside again.I say this problem every meeting and get no answer and im expected to put up with it i guess.Im on 60mg baclofen and i dont know if it does anything.Are my problems just falling on deaf ears or is this what neuros do as long as the mri says im stable.Im unstable symptom wise ffs.

hi jimmy

i only took baclofen once and it made my legs turn to spaghetti and it was dangerous on the stairs so i never took any more.

physiotherapy could help with your spasticity but it must be a neuro-physio.

it’s horrible, i feel like pinochio with strings too tight.

yoga stretches help.

carole x

hiya

if u r still the same then yippee! surely no deterioration is good?

sorry if i have misundertstood. tysabri cant undo damage already done.

ellie

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Thanks carole,i go to a physio but not a neuro physio.Dont know where to find 1 and id love to.Cant believe baclofen made you feel like spaghetti,ive never had that but it has that effect on a lot of people.i do stretches,but not affecting me the way i want

Hey ellie,yes not deteriorating is good and i am the same since before tysabri albeit had a relapse on gilenya that got me onto tysabri but spasticity is the symptom i have that i keep telling neuro about and it really does affect me and nothing is done about it.It is something id love eased a bit more but im not listened to.Anyway enough of my rant.Gotta be thankful that im still the same and keep dragging myself around eh. Jimmy

hiya jimmy

thats a small ‘rant’ and yes be grateful but its still blooming annoying!

this malarkey is a progressive incurable disease with no ‘one size fits all’ unfortunately. just from my experience-stretching and keeping muscles mobile much mre effective than any drug. i am further down the ms path so moving my toes is a good day for me! *sitting here trying to do now! usual tremor and effort but thanks to you i have just had a extra diy physio session today!

take care, ellie

Jimmy

The MS Gym has recommended exercise specifically for spasticity.

No substitute for personal help/advice from your own neuro-physio, but worth checking out while you get through the system far enough to see one of those! I’m very impressed by it and others who have seen a neuru-physio have commented that the exercises match the advice they’ve had there, which suggests to me that the approach is pretty sound.

(I asked MS nurse to refer me for physio but I think she’s forgotten - planning to remind her in due course but I’m starting lemtrada next month so I’ll get that out of the way before I get stroppy about the physio!)

Good luck!

Angela x

Hi Jimmy, I do hope you get the help you need. A lot of us on hear have experienced neurologist and gp’s who don’t listen grrrrr. Including myself :frowning: We just have to truck on as they say :).

Have you tried googling ‘neuro physio’ and the place you live, or the nearest big town?

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Hi, baclofen is a funny drug!

Neuros tell us to gauge our own dosage to see what suits best.

some folk can take a high dose ie 70/80mg a day

I took it and it stopped the spasms/stiffness, but it made my legs weak and falls occurred daily.

my maximum dosage was 60mg. any less and it didnt help.

but I believe it put me in a wheelchair only 2 years into disability.

some people have a baclofen pump inserted into their abdomen, which delivers the drug just where it needs to at small doses. this enables them to keep mobile with good spasticity relief.

pollsx

I am not sure they do, sometimes they make me feel like they’re just waiting for me to be consumed by ms and not interested until I am .

I am guilty of being put off calling the nurses when I am poorly…

I do know there are people a lot worse than me so I don’t like to take their time and feel bad when I do call them as I am still functioning fairly well with huge amendments in my personal and work life

There are days it just stops me in my tracks for different reasons.

I had a fields test and MRI over two weeks ago and I called just to ask how I would get my results and I was given a stock answer and made to feel silly and I put down the phone convinced she hadn’t listened to me.

Hey Hum !

I hope you find a solution soon Jimmy, I just wanted to echo your sentiments about not being heard

x