So after 5 months the Ms nurse contacted me she is phoning Monday, she had me increase baclofen by one tablet so 25mg a day but I found it wasn’t helping so stopped it then my legs started flinching so started it again, until I wS diagnosed in September I was dieting, but after being hit with vertigo for like 3 months almost walking is proving tough.
I am doing my physio exercises and trying stretches but nothing helps the stiffness even increasing baclofen didn’t help I was taking Pregabalin for pain but I think that may be causing the weight gain, the stiffness is now around my stomach and back and my legs lock up when walking, could anything I’m eating make this worse?
Just started on LDN only 1mg at night and increase by one each week until 4.5mg not sure I want to go that high neurologist had a cancellation but I couldn’t get there so he’s booking me in at end of month, stiffness spascisty is bad in back,stomach,legs,hands and feet what do you find works best for you?
Does LDN help at all?
Hiya Marie I can’t help you regarding LDN as I can’t take it because I take dihydrocodeine pain killers. I doubt the food you are eating is causing the stiffness you are experiencing though. I suffer from spascity, especially in my legs. They get so tight & stiff it makes walking so so difficult. They feel like they’re going to snap some days cos the muscles are that tight & rock hard to the touch. I use a rollator to walk with though, it lets me put my weight on it & is keeping me mobile. Have you spoken to your physio about any aids that you could use since you’re finding it so difficult to walk? The physio exercises won’t make your symptoms disappear, but they will help maintain your muscles and help stop them from wasting. That statement “don’t use it, you lose it” is certainly true in MS.
Another thing I find really helps is hydrotherapy. It really is so much easier doing the stretches in the pool. I find I can stretch & move my legs into positions I am unable to do out of the water. It’s gentle on your body & I don’t feel the pain in my legs especially, anywhere near as bad. It’s a great feeling being in the water. It helps lift my mood aswell. You should ask about getting a referral to hydrotherapy. I really think you would feel better & hopefully see some improvement.
I don’t take baclofen anymore, it stopped working for me. I take tizanidine instead & it seems to be helping. Have you tried this since you don’t think the baclofen is working for you?
Worth mentioning to your MS nurse.
Hope things settle down soon
Baclofen was the first drug I was on and have tried several others since. Do see an OT about aids and adaptations even sill stuff like a perching stool can make such a difference.
I take baclofen which does help to a degree, but we are all different, maybe trial and error until you get the correct dose.
Definitely have a chat to an ot, adaptations and aids can really be useful.
Yeah my OT well not mine but the one my physio got to see me she’s organising the steps to be wider and rails put up until I move, my Ms nurse is phoning Monday she may suggest tizanizine she mentioned it last time we spoke, a friend of mine said her friend has Ms and her sister in law does too and that she has progressive Ms and was like me struggling to walk due to stiffness but she has private health care due to work.
So she was admitted to hospital for IV steroids and some other medication spent a week in hospital after this she can walk without crutches and is fine now this sounds good but I don’t want to get my hopes up.
What do you think?
Hi Marie. Stories like that about steroids are very inspiring and I’m sure there are people who have some improvement following them but not everyone does. If steroids could improve our conditions so dramatically do you not think that every neurologist would be admitting us all for infusions?
These drugs have their uses but they are not miracle cures. It’s good to be optimistic but I’d hate for you to get your hopes up with something that’s unrealistic. The friend mentioned may have RRMS and having a relapse which often responds to steroids, or she may have inflammation in her spinal cord which also responds. That doesn’t make it a cure for ms.
I don’t want to be a pessimist, I’d love to hear of a cure but sadly I don’t think that’s it. Take care.
I am with Cash on this one, they can help some people with rrms, but many years ago, before it was realised I had ppms, the neuro gave me a course of steroids, but unfortunately they done diddly squat for me, apart from making me unable to sleep.
I don’t mean to put a downer on this, just want you to keep an open mind.
Sorry, should say Cath not cash!
The lady who had them is progressive, but I don’t believe in cures Ms has been going for decades and there is no cure steroids kept me awake too, but IV steroids is a different story, never had them my Ms nurse is phoning me Monday, maybe she can give me something to help with stiff hands and legs.
This sounds too much of a miracle to me I do expect to improve but if or when that happens who knows, my balance and stiffness is pretty bad and I do wish I did have a miracle cure, but I’m not that lucky so this and the stem cell articles I was linked seem just too good to be true but I am hopeful of LDN how much do you take x