After months of trying to get relief from terrible burning pain in my legs, I started Zonisamide about 6 weeks ago and it seems to be working. However, for the last week, I have developed a new weird sensory symptom in my legs and I’m not sure if this is MS or the drug.
This sounds like an odd way of describing it - but I feel like the skin of the my legs isn’t large enough to cover the “pressure” of the contents! (like a sausage that’s been over-stuffed). They’re not swollen, there’s no puffiness. They just feel like they’re under stress, like I need to stretch out all the muscles, all the time!! This is from my thighs to my feet…is this a spasm?
I’d never heard of Zonisamide, and had to Google. It seems rather an unusual prescription, for MS. Do you (also) suffer from epilepsy? I know some drugs used to relieve MS symptoms are mainly prescribed for other conditions, but have been used “off label” for MS. But Zonisamide doesn’t seem to be one of the common ones that’s used that way. It also seems to be used for spasms or seizures, but NOT for abnormal sensations, such as the burning sensation you originally had in your legs, so I’m just wondering what the background was to you being prescribed this, and not one of the more common ones (such as gabapentin, pregabalin or amitriptyline)? Did you perhaps try the others, but not get on with them?
The sensation you describe does not sound like a spasm to me. In fact, it does not sound muscular at all. I think if you were having a spasm, you would be able to tell, because you can feel (and sometimes see!) the muscles forcibly contract. It’s much more than just a strange feeling.
MS does sometimes produce abnormal sensations that feel as if you have a very tight piece of clothing, or a restrictive band/elastic bandage round the affected area. I wonder if that might be the same as what you are describing? I’ve never thought of it as my skin being too tight; to me it always feels like clothing, but I suppose it could feel like the skin?
Abnormal sensations (pain, numbness, burning, tingling) ARE listed as possible side-effects of Zonisamide (a surprising number of drugs have potential side-effects similar to the problems they were supposed to treat), but it doesn’t seem to be rated as common or usual. So although I couldn’t rule out the Zonisamide, I think it’s probably more likely to be your MS.
It was prescribed to me by my neuro after being on (over the years) gabapentin, ami, pregabalin, plus others I can’t remember, and lastly oxcarbazepine (which was working but then stopped being effective). I’m wondering if he gave me this as he thought “well, it’s an AED” and there are very few other options out there.
Like I said, it has worked on the burning pain (and stops my TN), but this new sensation is odd. I suppose your description of elastic banding is much more evocative (and sensible!!) than mine, although the sensation somehow feels like it’s coming from just under the skin, not round the skin. Blimey, this disease is odd.
I often feel as though my feet are jammed into a pair of shoes or socks that are far too small - even though I’m sitting looking at my bare feet with nothing touching them - very strange