Danger of confusion over symptoms
Having looked at information on various websites, and now having done the questionnaire, I am concerned that other people may have symptoms like mine and think that they do not have CTS. -
My questionnaire came out at 10/14% probability, but I most certainly have it, my nerve conduction test showed no measurable function in the median plus muscle weakness (don't have the figures on that), and I need surgery on both hands.
The problem with this questionnaire is having to comment on symptoms covering only the last 2 weeks. Mine have changed dramatically since last October when they began just as pins and needles. It gradually got worse, and by the end of the year my hands were going numb nearly all the time and I had pain at night, although thankfully not as bad as some people seem to have. (I do sleep on my back and try to keep my hands by my sides) Then in January symptoms decreased a bit, and I then had a period of about 4 days when my fingers could hardly move first thing in the morning. After that there was general stiffness, numbness on the ends of my fingers and only occasional pins and needles. I have however noticed a marked decrease in strength of both hands, which makes it very difficult to do day to day tasks, particularly carrying shopping, as I live on my own.
If anyone is waiting to see a consultant and has symptoms that have changed, DO NOT think that you are alright! Get a nerve conduction test as soon as possible, and I would suggest trying to limit the use of your hands. I think I may have made mine worse by continuing to do too much. Naturally I am concerned about whether the damage to my nerve is permanent, and presumably only time will tell.
Thank you for your comments. From my symptoms, is there anything else you can think of that could cause them?
There are a couple of other points which may help (or may confuse you even more!) -
I think there is muscle wasting at the base of my thumbs, slightly more on the right (I am right-handed) but it is difficult to tell on your own hand - it feels less firm to me, anyway.
There is another strange effect which I still get, but was stronger when symptoms were at their worst - little stabbing pains accross my fingers, mainly the second and third, which feel like electric shocks. It seems to be when the hands are in certain positions, like cutting up food and pulling clothes on and off. As a layman I would have thought that could well be nerves trying to work, maybe not the ones that usually do the job - any thoughts?
Regarding other health, I have recently been diagnosed hypothyroid, and am now taking medication. (In actual fact that was all one of my GPs was interested in testing, and seemed to think that my CTS might go away if I started to take thyroxine. It was only because I insisted on getting something done about the CTS that I got referred to the consultant.) Do you think having a low thyroid level, apparently due to thyroid antibodies, could be the cause of any of this?
I have always thought of myself as being pretty individual, but I wouldn't have thought I was the only one with these kind of symptoms!
Probably the commonest problem to masquerade as CTS is compression of the C7 nerve root in the neck, but the night time exacerbation of symptoms is much more characteristic of CTS if you had that earlier in the course of the problem. It's not really possible to get much further than that on the web by way of differential diagnosis - many other conditions can be mistaken for CTS, most of them mentioned on this site somewhere.
If there is genuine wasting of the median nerve innervated muscle at the base of the thumb then there will also be weakness but it is hard to illustrate how to test for that on here and you really need someone else to help test it - your doctor should have checked that if they think you have severe CTS on the NCS.
There is a link between having an underactive thyroid and CTS and there is a paper describing a small series of patients whose CTS improved when they started taking thyroxine. It remains unclear whether having treated hypothyroidism is still a risk factor for CTS. If you have been on an adequate replacement dose of thyroxine for a month or two (ie your thyroid function tests have been checked and confirmed that the dose is high enough) yet still have CTS symptoms and signs - I would have thought it was time to give up hoping that fixing the thyroid will fix the CTS and get it treated.
The electric shock like sensations on doing things with the hands seem to be not uncommon in CTS patients - both before and after treatment. I'm afraid I don't really know what they mean. They do not seem to be indicators of anything such as nerve deterioration or improvement - at least not so far.
Overall it seems most likely from the limited information I have about you that the current diagnosis of CTS, supported by NCS, is correct. Your own doctors are of course in a far better position to make that judgement than I am. Opinions on how it should be treated vary - my views are set out fairly comprehensively on this site but there is enough uncertainty in the medical scientific literature that other views are equally valid and we need some good treatment trials in CTS to clear up some of the outstanding questions. Good luck with getting it treated and, as I said. It would be good to hear how it turns out.
One final question - you said you had read through a variety of websites etc - did you find anything else useful that I should see? JB
The questionnaire is of course not by any means infallible and the prediction it comes out with is exactly what it says - a percentage - ie 14% of people with symptoms like yours, or about 1 in 7, will turn out to have CTS when tested. I hope we have made that clear enough in the result page.
There are a few additional points worth making. Perhaps the most important is that it is of course not designed to be used by people who already have a firm diagnosis so in your case there would never have been any confusion. It is true that people with very advanced CTS sometimes have a rather different symptom pattern to that seen in more typical and earlier cases, but one would hope that such cases would have been diagnosed, and hopefully treated, before they get that bad. It is therefore probably right for the questionnaire to concentrate on picking up earlier cases because that is when we want people to present to their GPs and get it sorted out.
Secondly, the part of the questionnaire where we ask for answers for an average day in the last two weeks is a standard tool designed to measure how bad the symptoms feel to you now and is actually less important for diagnostic purposes, though it does carry some weight in the diagnostic algorithm. All of the questions before the multiple choice section at the end are not time specific. We might add a further bit of explanatory text to that effect at some point. For the present I have added a bit more description of how it is supposed to be used and may be expected to perform on this page. I have looked over your answers and the main reasons that your score is low is that you do not have the most typical symptom of night-time waking with the hand symptoms and the distribution of the worst symptoms in the fingers is one of the less common patterns for CTS.
If your nerve conduction studies really show no measurable function in the median nerve then I am afraid that your chances of a good result from surgery are less than ideal. Nerve conduction results this bad however are usually accompanied by wasting of the muscles at the base of the thumb which should be obvious to anyone (see the picture on this site), so if you do not have wasting of the thumb muscles then something does not add up and one would be a little more circumspect about predicting outcome than usual.
Hopefully you are not having to wait too long for treatment. It would be interesting to hear how it turns out. JB