I believe in her posts Raglet said she has Lupus. There are four types of Lupus and I don't think she said which type she has. Her hand problem could possibly be from Lupus and she also mentioned a hip issue I believe which can be from Lupus as well.

Raglet's hand claws but does not look like a CMT hand from the picture. And not all CMTers have clawed hands.

It doesn't mean that she doesn't have other health issues as well. Waiting to hear from her.

I see carpopedal spasm. The majority of effect is in the wrist. (the larger muscles are affected before the smaller for most people)
If you search this symptom on the net you will find some causes.
The most common (since this is not a common symptom) is
disturbance in calcium levels, and the ratio of calcium/magnesium.

I guess what is really important is to understand that things may be caused by more than one trigger. Very often when someone has a serious disorder, everything gets attributed to IT, when in fact something ELSE may be occurring as well.

That is the only reason I bring this up in this thread.
(not to refute the Lupus diagnosis).

I agree. Sometimes people like to attribute everything else to whatever one is diagnosed with. It's common with no matter what you are diagnosed with.

I will say again that Raglet's hand, from the picture, does not look like a CMTer's hand at all. I did a search on what you mentioned mrsD and I came up with information, causes, etc. for it. There also was a picture of a hand with it and it certainly does look like Raglet's hand. I'm sure mrsD that you have seen this. Thanks for the information.

lupus affects the kidneys.

And when the kidneys don't work properly, then the
electrolytes can get messed up.

Another factor could be wrist drop.
Raglet's fingers are not as extreme as with carpopedal spasm,
so hers might be a wrist drop scenario, or a mild carpopedal.

In any case it is not a nice thing to deal with.

I had terrible loss of function with my carpal tunnel for several years. It was very very inhibiting and painful. I am so grateful that most has resolved. At the time it seemed like a long dark tunnel ahead!

Thanks mrsD. Years ago, I had tendenitis. I know that is not the same as carpal tunnel syndrome but it was not fun. As I recall, I believe I got it from helping with airplane annuals where I had to unscrew screws and screw them back again with the screwdriver. There were a lot. Later I used a battery operated screwdriver. But I dearly loved helping with airplane annuals.

To this day if I do repetitive stuff like crocheting or knitting, etc. I can feel it and I quit. I only do so much at a time. And I haven't done any of that for quite some time now. My doctor told me that she would put my arm in a cast, at the time, if I did not pretty much quit using it for I believe it was six weeks. That time along with taking prescribed Motrin.

At any rate, I am very careful now as to what I do and how I do it, etc. I'm glad your carpal tunnel has now pretty well resolved. Nothing fun at all.

I hope Raglet gets some help for whatever is causing her problem.

Thank you.

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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Thanks for the update Raglet. I looked at your latest picture of your hand and the comb. From what I can tell, it is not CMT. CMT hands do not look like yours.

It sounds like you are trying to get on top of it all. And that you have found some answers. I hope that you can find out further. Take care.

Raglet, I am by no means suggesting that you have a certain disorder or disease, BUT I have seen similar stricture of the hand in my mother 10 or so years ago. She was doagnosed at the Mayo as having Shy-Drager a Parkinsons-plus syndrome. It is now called Multiple System Atrophy. She had it for 17 years and ultimately her hands began to atrophy with her fingers curling inward. At that time Mayo was beginning to do clinical trials with a new drug, now known at Botox. They gave her injections into the muscles of her lower arm and hand which allows the muscles to "relax" for a few months at a time. She said, however, that the inections were painful and she ultimately stopped. But that was a long time ago. Perhaps you could ask your physician if they're doing that regularly. I know that aside from Hollywood A-lister getting their faces injected to stop the "worry lines" and "frown line" that it's being used to prevent migraines, stop or reduce excessive sweating and has several benefits.
Botulinium toxin, hey, it's "natural".