My legs are getting so much worse… the pain, the stiffnes, walking distance getting sooo much shorter…

I’ve posted about this not so long ago… I take baclofen, my GP has just put it up to 10mg x 3 per day.

But… what I am worried about…

My neuro thinks HSP or possibly even PPMS… (he already dx’d me with spastic paraplegia) so if my legs are getting worse… and both HSP and PPMS is progresive…

are my legs gettign worse… and going to get worse… and worse…

I feel like I am on a downward slope at the mo. But unlike RRMS, it doesn’t look like a flare up… It’s not going to get any better is it???


Difficult to know what to say :frowning:

First thing I guess is that 30mg a day of baclofen is still a fairly low/moderate dose, so you still have a lot of leeway if things get worse and/or 30mg doesn’t do the trick.

Second thing is that yes, your legs may continue to get worse, but this is absolutely NOT a certainty. I don’t know anything about HSP, but PPMS can change between fast and slow periods of progression and can even stop completely.

Third thing is that, even if your legs continue to get worse, you will learn to live with it. There are some excellent meds, aids and therapy to help, and ultimately, you will cope. I’m not saying that it’s easy, but it’s amazing what we can still do with dodgy legs!

Karen x

Thanks Karen…

I’ve only just gone up to 30mg from 20 so may not be feeling the benefit yet, so fingers crossed the change does something.

I am sure I will adapt… I’ve adapted so far :slight_smile: Sometimes it’d be nice to see a crystal ball just so we can be prepared and know what to expect…


Jules, I’ve had symptoms for fourteen years. I was thought to have MS but now I’m with a Professor in neurogenetics. I have spastic paraplegia, ataxia and optic atrophy due to optic neuritis.

I’ve taken baclofen for about twelve years. I take between 60/80mgs. I was once told I could go up to 100mgs and at times I can also add diazepam. The Professor in neurogenetics did say spasticity in HSP doesn’t respond well to baclofen. It was another thing that he felt didn’t point to HSP for me.

Spasticity can increase for various reasons. The first things I check for are urine infections, chest infections. Temperature can also play havoc, heat and high humidity or very cold temps. Tight clothing, especially tight waist bands on trousers, a tight bra or shoes that are too tight. Piles can cause increased spasticity in me.

You will learn in time what your trigger points are and be able to control your spasticity. Maybe increase to 40mgs and see how it goes. Also daily stretching is important. If you search around the net there are some good stretching exercises for spasticity.

I hope it improves soon.

Jacqui xx

Spasticity/stiffness seems to be an issue I’ve battled with an and off. I had a stiff leg when I ran from last march and then neck spasm twice the second time was when I started noticing pins and needles in my fingers and was referred to a physio. Then I had may major neuro flare up of other symptoms (parasthesia/numbness on L, bladder, bowel issues). Then I had stiffness and pain around my scapula after this flare up (which I think was because all my symptoms had been on that side) the osteopath worked on. I then developed the hug in april. Then I had ?TN and jaw spasms. Then I got whooping cough and symptoms reflared and went all over the place and I had an abdominal spasm on the L which was excrutiating. I couldn’t turn or twist and leaning on it or a touch would send me screaming. I had a short course of diazepam for my neck spasm and took 1 diazepam which made a huge difference when I had the abdominal spasm. I haven’t been given any other meds but have just seen a general neuro for second opinion and am now being referred to an MS specialist by him. At the moment my legs generally feel tight and stiff.

It’s interesting what Jacqui says about triggers. I’ve relaised tight clothing or belts isn’t great for me and particulalry when I’m at my worst. The cold makes the spascticity worse though heat makes the other symptoms reflare. I do yoga twice a week and that really does help me. I think this with the osteopath sorted the scapula pain out. I also find one posture isn’t great so I tend to move around now so I’m not in a fixed position which is more likely to trigger it.

I really sympathise Jules. Its so difficult not knowing how bad things are going to get. I guess you have to clutch onto the things that can help (stretching and meds and aids) and just hope. You’re not alone though.

Sending lots of hugs