“If you a veteran visitor to this blog you will be aware that as an extension of our length-dependent axonopathy (LENDAXON) and therapeutic lag hypotheses we are proposing that progressive trials in people already using a walking stick (EDSS = 6.0 and 6.5) or wheelchair (EDSS>=7.0) should focus on upper limb (arm and hand) function as the primary outcome. This proposal is supported by many data sets and is strongly supported by the recent results of the ASCEND trial (natalizumab in SPMS). Although this trial was negative overall it showed that natalizumab was effective in maintaining upper limb function compared to placebo in pwSPMS. Despite presenting and writing about the LENDAXON and therapeutic lag hypotheses, lobbying pharma and discussing things face-to-face with colleagues there seems to be some resistance to adopting our ideas and trial proposal. We are hoping to change things at ECTRIMS; we have had one of our Blog Surveys on the importance of arm and hand function to pwMS accepted as a poster and there will be a debate on this exact issue as well. Dr K or Dr Schmierer will be making the case for trials in more advanced MS using upper limb function as the primary outcome.”
“We also planning to launch an initiative around ECTRIMS to allow pwMS to perform their own 9-hole peg test (9-HPT), i.e. a self- or home-administered 9-HPT, so that you can start monitoring your own arm and hand function. If we don’t get people to ThinkHand then the chances of getting effective treatments for people with more advanced MS will remain slim. One of the problems we face is that both the 9-HPT and the ABILHAND (a patient-related outcome measure or PROM) to assess arm and hand function are designed and weighted towards assessing precision, rather than power, tasks. It is clear from the evolution of the hand (see abstract below) that we need both precision and power. As MS impacts on both of these functions we may need newer and better outcome measures that are more sensitive to change to measure these functions in more detail. We also believe that the current upper-limb outcome measures are not that meaningful to pwMS; Alison Thomson in our group is hoping to change that as well. She is currently ruminating on how to develop and improve on the current PROMS; she is passionate about making a PROM that reflects the impact MS is having on your life.”
Richard W Young. Evolution of the human hand: the role of throwing and clubbing. J Anat. 2003 Jan; 202(1): 165–174.
It has been proposed that the hominid lineage began when a group of chimpanzee-like apes began to throw rocks and swing clubs at adversaries, and that this behaviour yielded reproductive advantages for millions of years, driving natural selection for improved throwing and clubbing prowess. This assertion leads to the prediction that the human hand should be adapted for throwing and clubbing, a topic that is explored in the following report. It is shown that the two fundamental human handgrips, first identified by J. R. Napier, and named by him the ‘precision grip’ and ‘power grip’, represent a throwing grip and a clubbing grip, thereby providing an evolutionary explanation for the two unique grips, and the extensive anatomical remodelling of the hand that made them possible. These results are supported by palaeoanthropological evidence.
Since natalizumab failed to meet end points in the ASCEND trial why would hand function be an exception? Is there some anatomical reason why hand function is preserved?
its like EAE the tail is affected first, then the hindlimbs then the forelimbs. The Endpoit is EDSS which is a mobility scale and so is looking at lowerlimbs that are affected prior to upperlimbs
I lost hand function 3 years after diagnosis. I was walking unaided but couldn't dress myself, hold a knife and fork, pick up a teacup or write. Function returned but never returned to previous ability. It's Multiple Sclerosis I'd previously lost my sight had pins and needles and numbness in my legs and struggled to walk. Why has hand function always been ignored? All I got was putting kidney beans in a tin with an OT.
MD, as a follow up, what is the basis for this ascending paralysis? Is it simply a function of distance from the CNS?
The longer the nerve tract the more likely it is that it is hit by a lesion.
You talk about the importance of exercise and brain health. Are there any simple steps to help retain the use of hands and fingers. My problem is feeling with my finger tips. so I find it difficult to do up buttons by feel and writing.Would it be a good idea to practise these activities for 10 or 15 minutes a day
Patrick, am not sure if this is helpful. This hobby might not be for everyone but I did not do well on the 9 hole peg test so I picked up lock picking as a new hobby. There are plenty of starter kits on Amazon, a clear plastic lock so you can see the pins and basic set of tools. Then you can work up from there. I have 6 or 7 locks in my desk at work, it's a nice fun little hobby.
Could exercises or activities for improving fine motor skills help? As Aidan suggests a hobby. Activities like painting and drawing, crafts, sewing and knitting.
It's really good that you are pressing ahead with this. It is so obvious that if upper limb function can be preserved then people can stay independnet for longer. Thanks for posting, surveying and raising at ECTRIMS Bouncy
Good heavens is this real…depressing that such a questionis put out there..not to mention debated..I am out for rest of today.ThinkHand: how important is your arm and hand function to you?
First 2 relapses 4 years ago included loss of feeling and movement in left arm/hand leaving reduced strength and dexterity even now. Cupping the hand or using the fingers to operate a pump action hand soap takes concentration, as does picking up something small.Losing hand function is up there with eyesight for me being an art and crafts person, leg function not so much.Several times over the last 2 years I have woken during the night with both hands completely numb, I am told 'ms doesn't do that' but it feels like an ms thing to me, is it?
'MS doesn't do that' If you find out what it is, please let me know Julie, because I'd like know. It's a horrible feeling. Same as when I was told you don't get pain from MS in the early '80s.
"Several times over the last 2 years I have woken during the night with both hands completely numb, I am told 'ms doesn't do that' but it feels like an ms thing to me, is it?"Have had this happen and yes it's scary. It's just sleeping with the hand in such a way that blood supply is cut off. It takes a while to wake up and then it takes a while for the blood to "re-boot" the handback to normal feel. Sometimes takes an hour or two. But if it's both hands it could be something different related to MS.