I have been dealing with MS for the past 20 years. While originally in the relapsing remitting category, I have clearly move into the secondary progressive phase of the disease. From the outset, most troubling, particularly while sleeping, has been what I will call "spasticity" which manifests itself as the constant (up to 3 hrs.), uncontrollable upward movement of my toe toward my calf. I also have foot drop and use a Blue Rocker. However, to control this spasticitiy, my neurologist has only recommended baclofen, which does nothing to help. Can you suggest any alternatives? Thanks.
If the spasm or contraction is as constant and as localized as you mention (just involving the big toe extensor muscle) then the best solution is botox injections. I assume the big toe doesn’t point up like this during the day while you are out of bed? Even if the spasms involves more muscle groups this may be a good solution since you avoid systemic medication that can have other effects on the body.
Other solutions include the following:
1. Increase the baclofen dose to as high as 60 mg at bedtime very gradually (10 mg increments once a week) and stop increasing if any side effects occur. Sometimes you need higher doses. In my experience few people benefit from doses above 40 mg at bedtime
2. If baclofen clearly is not effective, give tizanidine a try beginning with 2 mg at bedtime and increasing to a max of 8 mg if tolerated (dry mouth and lightheadedness on standing are side effects)
3. If this doesn’t work, add gabapentin at bedtime beginning at 300 mg and increasing gradually to 1200 mg at bedtime
4. And last but not least, benzodiazepines like clonazepam or diazepam at bedtime usually work well but we prefer to save these medications as the last choice.
Make sure you do not continue to take unnecessary or ineffective medications for this problems
Talk to your MS specialist about these choices, and see if you can find a solution
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego