hi guys

thanks for the replies.

I have sle, systemic lupus, and thankfully my kidneys are fine, but I do have extensive neurological involvement (nerve damage, brainstem problems, etc etc). The weird thing is that I meet the criteria for both PN (sensori motor) and mononeuritis multiplex for other nerve damage I have (eg a nerve going from T1 down to my hip is basically no longer working). I also have a lot of cranial nerve neuropathies affecting tongue and swallowing mostly.

I have been told that my hand is probably central (brain) as opposed to peripheral, but who knows. The original photo doesn't show it, but my fingers claw up when I try to pick something up and I grip things I will attach another photo to show this. It is very annoying as of course it is a very inefficient way to pick anything up.

I am very open to this bing something other than lupus, though seeing lupus can attack any part of the body and cause virtually any symptom, then it's always the first stop when looking for a dx.

I have never had my calcium levels checked, but I take 1600mg of calcium a day prescribed by my rheumatologist. I will ask my doctor to through in a calcium level with my next set of blood tests. I can't remember which sort of calcium I take, but I know I have previously researched it to ensure that it is the right sort (I know some are better than others).

The interesting thing for me though is that my toes seem very similar to the photo attached below, and I have always been told that it is part of my peripheral neuropathy. From what I can see my hands are going the same way so either they are both peripheral, or both central as they are too similar. I definitely have sensorimotor PN in my feet legs, and it is on it's way in my hands but hasn't arrived yet (my nerve function studies are changing in the direction of PN and I barely scraped into the normal range this time, but it still was normal so no PN). I have been told to expect that it will make it's appearance.

I have bilateral footdrops, but as yet no wrist drop. I have lost a little strength in my wrists but nothing major, and my problems are more with my incredibly fumbly fingers. This often makes my hands feel weak, but when tested the strength isn't too bad.

The silly thing is that I have previously had PN in my hands, but that was severe pain, whereas my current sensory changes are numbness. I 100% prefer the numbness to the extreme pain I was previously experiencing, I can guarentee that!

Thank you SO much for the word 'carpopedal spasm' - so often it is knowing the right will bring up lots of information. I will get busy looking at stuff.

I think also a trial of baclofen could be useful to see if could help.

thanks a bunch guys, you rock.

a much more cheerful raglet

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