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Spasticity - Any Succss ?

Hi folks,

I have a spinal cord lesion which could be PPMS or radiation damage. I have come to the conclusion that I will never know the true answer and have to live with forever in limboland!

Anyway I have spasticity in one leg (mainly calf and quads)

I am currently on baclofen 40mg a day and I still have a stiff leg.

I have tried tizanidine which put me to sleep.

I have had a baclofen pump trial and that made my good leg and normal arms all floppy BUT did reduce the stiffness in my bad leg very well.

I tried botox although I am a bit suspicious that it wasnt done properly as the guy didn’t use an EMG machine. Also they only injected one of the calf muscles (gastrocimus) and not the soleus muscle and the physio said this was the most spastic.

The FES foot drop system cant fight against the calf spasticty either. I have been told it would work really well if the calf muscles would just relax.

The muscles are also huge - too big to wear the boots I wore last year.

I have been told to stretch and stretch etc. I saw a video on youtube were a doctor was talking about putting a lower leg in cast to stretch the calf muscles - has anyone had this done? I bought myself a foot night splint to wear at night. I put it on when I go to bed but alway wake up with the muscle screaming in pain. So i take it off and This is my only real problem and am grateful for that but I somtimes think I could walk better with the legs that Oscar Pistorius has!

There is an operation performed by a neuro surgeon in the states (Dr Justin Brown) for San Diego called selective peripheral neurotomy in which the trim the nerves so that the muscle gets a more normal amount of stimulation. He has got people out of wheel chairs and walking again after this procedure and I am tempted to pay him a visit. My neuro had never heard of the procedure.

Do anyone else have any advice for me which would be greatly appreaciated.

Moyna xxx

Hi Moyna,

I believe 40mg Baclofen is a long way from the maximum. Have you tried raising the dose (i.e. short of the pump, that is?)

I am on 60mg a day, which my original neuro thought excessive, but my GP and latest neuro haven’t commented on. I think the “right” dose of Baclofen is something that is very variable. I think there was an assumption that because I don’t appear very badly affected by MS, then I shouldn’t need a very high dose, but believe me, it is only by trial and error that I have got up to 60, and if I try to make do with less, my walking is severely affected.

If anyone challenges it again, I’m minded to skip a dose before my next appointment, so they can see for themselves how much worse I am, and say: “NOW do you understand why I won’t reduce?”

They always seem to be worried about Baclofen making people weak and drowsy, but as I haven’t experienced any of those side-effects, it seems to be an over-precaution in my case. I may just be someone who doesn’t respond at low doses - dunno why, just the way it is. I resent being told to cut down, when I have worked out for myself what is optimal. GP (who knows me better) agreed. Her reaction was: “Oh, take no notice! You never take anything unless it’s necessary!” There seems to be scant evidence that tolerance is a huge issue with Baclofen.

I also take diazepam - mostly only at nights (occasionally daytime for anxiety, but that’s different). And quinine - although that is for cramps and cramp-like pain. Related to spasticity, I’m sure, but not the same. All have helped to some degree, but none are a 100% fix. They make it manageable, but not gone.

I would certainly want to try higher oral Baclofen and/or other adjuvant meds before jumping straight to anything as drastic as surgery or legs in plaster cast. 40mg of Baclofen and nothing else sounds a very conservative regime.

Yes - I too have got huge calf muscles. In fact they look very shapely, as if I work out! How appearances can deceive, eh?

I remember high muscle tone being one of the first things I ever noticed. On my 40th birthday, after a few family drinks, a rather morbid question came up, of: “If you suspected you might be ill, would you go to the doctor?” As it happened, they weren’t talking about me - but that’s another story. But it hit a nerve, so to speak (no pun intended), because by that time, I was beginning to suspect something a little odd going on with my body, and I showed Dad my leg, and asked: “Do my legs look normal to you?” (in particular pointing out the deep shadow cast by the over-developed calf muscle).

Mum & Dad both thought I was an absolute basket case, and Dad said: “But that’s just your muscle, Dear, isn’t it?”

I replied: “Well, I suppose…But they didn’t used to be like that!” Gaining muscle tone at 40, when you haven’t suddenly taken up sports is a little odd, isn’t it? Of course, at that time, I had never heard of any disease or condition that caused excessive muscle tone (hypertonia). I’d heard of muscle-wasting diseases, but nothing that did the opposite.

Tina

x

Have you tried regular visits to the gym? It has really helped me especially with leg stiffness and dropped foot. I still don’t have the stamina to walk far but spasticity and stiffness is heaps better.

I prefer not to take drugs for it so thought I’d try that and it’s working well.

maybe a bit controversial but i know one man with ms who swears by sativex.

his neuro first prescribed it for him and now he has it on repeat prescription.

good luck

carole x

Don’t see why it’s controversial, Carole. It’s a legal, licensed drug. In my opinion, the only controversy is that it’s not routinely available. I think Moyna will be very lucky if she can find anyone to prescribe it, even if she were willing and able to fund it herself.

Tina

x

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Thanks Val, I do go to the gym and it certainly helps especially the yoga classes.

Thanks Tina, you replies are always very informative and helpful. I will do that and adk to be increased to 60 mg per day. I did find this on the net and thought it looked promising/

"Clonidine has been found to be associated with improved walking ability in individuals with incomplete SCI (eg, longer cycles, increased treadmill speed, and more upright posture).21, 50

Clonidine, a centrally acting a2 receptor adrenergic agonist, has been successfully used as adjunctive therapy in patients with spinal cord injury with problematic spasticity not adequately controlled by recognized spasmolytic agents. A transdermal system providing approximately constant and continuous systemic delivery of clonidine has been recently introduced to enhance patient compliance. However, experience with transdermal clonidine in the management of spasticity is limited. Three cases are presented of patients with spasticity as the result of cervical spinal cord injury, inadequately managed by oral baclofen, in whom transdermal clonidine was administered. Significant improvement in spastic hypertonia was observed in all three cases. Transdermally delivered clonidine was well tolerated, with reported side effects limited to dryness of the mouth."

Thanks Carole, I have asked my neuro about sativex and he said it is to treat pain of spasticity and spastic jerks. He did not think it would help my walking.

Thanks Again Everyone

Moyna xxx