Hi guys, been a forumite for years, glad to find the boards back! Long history of mostly weird stuff, but pertinent details include viral encephalitis that affected my right side and left me with SP epilepsy which I take Topamax for. Complicated migraine, and chronic fatigue, although I think that may be a generalised name for something else lurking and yet to be discovered .

When I got the encephalitis I had bodywide twitching etc which I put down to BFS. That has settled. When I went onto the Topamax I got the classic finger, toe and face tingling and that pretty much settled too (been on T for about 3 years now), except for my toes. The tingling seems to have remained.

It worsens if I sit and put pressure on them (like they are scrunched up) or when walking for a while, or in shoes with pressure. Sometimes it is just out of the blue. Sometimes it is massive tingling, often it is just numbness. It seems to have worsened in the last 12 months. I have also developed blueness in my fingers and toes with cold (Reynauds??) and have temp intolerance all round (heat and cold). When I'm tired I also get a restless right leg, which is my "bad" side - odd I only get it in the one leg tho'!

I take supplements on and off, magensium for migraine, B12 etc. Pretty good diet, but it could always be better Any thoughts? Thanks

I also have migraines and headaches. Though I think a good portion of my problem is associated with structural problems in my neck. Topamax is very popular and from what I heard has a couple favourable side effects.

Magnesium and calcium should help with twitching. I belevie it is magnesium oxide to stay away from as it's not absorbed well, and you may have frequent trips to the loo.

Magnesium citrate is a better choice. I take a mag/calcium combo that help me with cramping in calf muscles at night.

Regarding headaches, aside from the Topomax, getting proper sleep and practicing relaxation should help tremendously if headaches are associated with stress and tension.

All the best

Have you been seen by a good neuro specializing in peripheral Neuropathy? I'm guessing that you see one for the epilepsy. But have you seen one specifically for the neuropathy symptoms?

Also take a look at www.lizajane.org.

I think I remember Reynauds has peripheral neuropathy as one of it's symptoms. So have you been seen by a rheumatologists?

Also, with the migraines, they could be caused by structural problems in your neck. This is something that I had and a ruptured disk and subsequent fusion helped them a lot. So an evaluation by a rheumatologist to see if there is degeneration from bone problems might be in order. I believe Glenn has posted that perpheral neuropathy can be caused by problems in the upper spine.

Just some ideas I'm throwing at you.
Billye

Thanks guys, I'll take any and all ideas. I'm teeteering on the edge of wanting to see a rheumy at the moment.

Your symptoms are consistent with PN. But they are also consistent with foot-specific issues, including overuse syndrome. I had similar symptoms, which faded after I got wider shoes with better arches and avoided walking barefoot indoors.

Good point, Steve. It's too often that once we have a diagnosis of something esoteric, everyone forgets to look for the simple and obvious.

Yes. Some of us learned that the hard way!

I swear you are talking about me! Wow--you covered all my symptoms except maybe for the dizziness. I can't imagine giving up walking barefoot, barefoot seems to be my only relax time for my feet. I hate shoes, they touch me. Sandals are best, but can't wear them in winter. I do have headaches, all the time and get very dizzy when I look up, usually at something close, like when being hugged. I also find that I tend to drag my feet at times and sometimes must consciously remember to pick my feet up. I have Raynauds in my hands, but never noticed it in my feet, not yet anyways. I get a pinched nerve in my neck/shoulder area at least once a month--or at least the feelings of a pinched nerve. The muscles in my shoulder bunch all up and hurt so much. So yeah, it sounds like you are talking about me.

Deb

I used Topomax from August 2005 through November 2005 and my toes are still numb from it. Other side effects are that food never tastes the same again. Cramping and numbness can be relieved by massage and hot bath massages. The FDA needs to look into this drug not only for the birth defects it caused but for the blood circulation problems it is causing for years after being taken.