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Advice on baclofen pump needed

Unfortunately when I take baclofen orally it knocks me into never never land. But my right hip flexor/abductor and basically all my thigh has been in the most horrendous spasm for a few weeks now and is solid it’s so tight. It’s so unbelievably painful. I can’t weightbare at all.

For a while the drs have been pushing a pump but I’ve refused it as it seems so invasive -what if it doesn’t work? What if having it causes more problems?

Im sorry but I feel completely lost at the moment. My quality of life is none existent but I’m scared.

Sx

Hi S

I have SPMS… and can relate to your problem. I take Baclofen orally . Considered a pump… Could only weightbare on one

leg, rather like a flamingo (not a pretty one at that!) Exercise is paramount or Physio help. I am wheelchair dependent so for

me… I just want to be able to retain my transferring.

D

Hi Anon,

I sympathise. Horrendously painful leg spasms are one of the most shitty symptoms of this shitty disease of ours. I have a couple of suggestions to offer before you go down the road of the Baclofen Pump, You may or may not have tried them, so feel free to ignore me if you have:

Have you tried other drugs like Clonazepam or Tizanidine? For me, 1mg of Clonazepam at night has been nothing short of a wonder drug. After years of suffering ludicrously painful leg spasms, so bad they kept me up most if not all of the night, Clonazepam has cut them dead. I now sleep really well and have no problems at night. I believe it can be taken in combination with other antispasmodics if it doesn’t work on its own, but as with most things ms related, its a case of talking it over with your neurology team and specialist nurses. I know some people also swear by Tizanidine, but I have no experience of this drug so I can’t say too much about it other than talk it over as a treatment option with your Doctors.

CBD Oil. Again, some people swear by this as a remedy for pain and spasms. You may have to do a bit of research into the issue via google, or seek the opinions of other more knowledgeable forum members than myself, but it might be worth a shot.

Magnesium - either as a cream or as a tablet. Again, I’ve never tried it but some people but a great deal of store by it, and may also be worth investigating.

I hope you find a solution to your problem soon,

AV/Nia.

Hi.

I have the same problems with oral Baclofen, and indeed all oral anti spasmodics.

I was referred for a Baclofen pump. I live in the northeast and the way it works here is you have to have a trial first before the op. You go into hospital as an inpatient and they inject a test dose the drug into your spinal cord via lumbar puncture . This is to check that it does work for you and you are assessed by a physio for its effectiveness. It takes a couple of days and you know at the end of the trial if it’s for you.

I decided not to go ahead with it as I can still walk and it was going to leave me too weak to do so. It turns out my horrendous spacticity is the only thing keeping me upright, but I’m still on the consultants books in case I change my mind or things change in the future.

However I have a friend with one and it’s changed his life. He’s gone from being totally chairbound to being able to take a few steps with a frame and self transfer.

You don’t say if you’ve spoken to the specialist concerned. Maybe see if they do a trial first. I was similarly freaked out by the thought of the op but the trial lets you know what’s it’s going to be like without that.

Hope you get sorted

Dawn