I have had that, too. In fact, it's one of the "things" in porphyria. I had it bad in the fall because a dental surgeon gave me the wrong anesthetic. Vertigo and PN in the feet for months. Got over vertigo in four months, feet better in six.

I jerk, too. Mostly at night or when I lie down to relax. My lower spine and legs jerk. It's called myoclonus, and some people call it myoclonic seizures, but some say it is not seizures. They obviously don't know! I control it with l050 mg of Magneisum a day. I could not take Dilantin because of having porphyria, but Klonopin is one drug I can take. I take a small dose daily, but magnesium is the thing which really helps the myoclonus. B1 has helped lately, too. As I age I need to add more things to help the condition. p-5-p (pre metabolized B6) has helped too.

Sometimes I jerk clear off the bed. It's been bad lately and harder now to regulate with magnesium.

I have lots and lots of brain scars and about 50% of docs call then MS and the other 50 % call them porphyria scars. They don't know. So they guess. since I got dx'd with MS l9 years ago I have only met two neuros who had a clue about this subject. I met one, and heard about the other. The one I met was a "headache" neuro I was sent to after I went to the ER with the bad PN. She said she thought the scars were probably from porphyria, but that I needed to hook up with a good MS clinic as they were the best to treat this condition, whatever it was. She wouldn't take me on as a regular patient because she specialized in headaches, and I don't have any, or if I do, they are not painful. Possibly silent migraine?

I will never fully know what it was that I had. But both porph and MS are in my dad's family back as far as we know to look. Great grandma in a wheelchair in my dad's childhood home, presumed MS. His mother had porphyria, dx'd in retrospect by my diagnostician when I got the dx. I probably have a "both" in some weird combo that goes down generations. Double whammy. Means I can't take MS drugs.

Mariel