What is the EDSS of a patient that is able to walk>120m with bilateral assistance and also with unilateral assistance but less than 50m? 6.0 or 6.5?You should always score the patients best possible performance, so in this case 6.0 for walking more than 120m with bilateral assistance.
What are the requirements for performing EDSS? Does the investigator have to be a neurologist or can they just be a physician not specialised in neurology? Can nurses perfom EDSS?We strongly recommend that EDSS is performed by a neurologist or a neurologist in training. For certain studies other requirements may be defined by the sponsor.
Patient has non-MS-related findings (cerebral paralysis related mild ataxia and dysmetria), which affect the cerebellar FS symptom. Should this finding be reflected in the cerebellar FS score (=2), but not taken into account for EDSS calculation? Or should it be neither reflected in the cerebellar FS score (=0) nor in the EDSS?The functional system and EDSS scores should reflect the MS related deficits only. Non-MS-related findings should be marked (e.g. with a P) and will not be taken into consideration when assessing the FS scores and EDSS steps. So, in your case, if the cerebellar symptoms are clearly only apparent due to the non-MS-related cerebral paralysis, the cerebellar FS would be 0. In case of any doubt the examining physician should assume a relation to MS.
You say that signs or symptoms that are not due to MS are not taken into consideration for EDSS. But there is often room for doubt. A recent trial patient said her pain was due to a trapped nerve and this was also the opionion of her pain specialist. But I thought it was MS spinal relapse, treated her with steroids and she improved very well...which does not of course prove it was MS relapse! So who decides if symptoms and signs are or are not due to MS? Both MS specialists and patients probably have a bias which may be in oposite directions. I think we should take objective note of impairment regardless of opinion on cause. So a double amputee with MS inevitably has EDSS 8.0 or greater.Of course there is much space for subjective assessments. Therefore we suggest that "not MS related" and therefore not taken into account for the scoring of FS and EDSS where the examining physician (not necessarily the patient) is really convinced that this is not MS related. In case of doubt these findings should rather be taken into account for scoring. In the case of pain mentioned this would certainly be the case. In the case of an amputee or early childhood amblyopia not.
What if a patient has a congenital limitation that is still observed in the neurological evaluation, being visual amblyopia or motor impairment. Do we consider it or not in the scoring ? Or do we score it as a sign present but no limitation related to MS ?Signs or symptoms that are not due to multiple sclerosis will not be taken into consideration for assessments, but should be noted.