ClinicSpeak: Under-reporting of relapses

Am I so wrong to be promoting ZeTo? #ClinicSpeak #MSBlog #MSResearch

Are you reporting all your relapses? If you don't it could have consequences.  #ClinicSpeak #MSBlog #MSResearch

“The problem of not reporting and documenting relapses is a serious issue for MSers living in the UK. I saw a patient in outpatients yesterday who has had MS for just over 6 years. He was diagnosed as having CIS after presenting with the MS hug (tight constriction band around the chest) and loss of feeling from waist down and weakness in the legs. When he presented he had an abnormal brain MRI and a positive spinal fluid analysis. Anywhere else in the world he would have been put on therapy; in the UK 2008 we weren’t allowed to treat CIS. Over the next 6 years he went onto have mild attacks; patches of sensory loss and tingling in the arms and legs. Although he was seen at clinic on an annual basis these symptoms were dismissed as possibly being due to minor relapses and because they were not documented his diagnosis remained that of CIS. Tragically not repeat MRI studies were done to see what level of activity he had. He was referred to me in mid-February with progressive weakness in the legs since December of last year. He is now using a walking stick. The weakness came on quite suddenly over a few weeks suggesting this was possibly a relapse; but since then he has progressed. He was treated with a course of steroids before Christmas, but this made little difference to his functioning. He has bladder problems, chronic constipation and sexual dysfunction. He is depressed and is anxious about losing his job; he is having increasingly difficulty at work mainly due to memory problems. He tells me he forgets to complete tasks. His latest MRI show a massive lesion load, gross brain atrophy and four gadolinium-enhancing lesions. Although he has focal inflammation on his MRI and a recent history of a disabling relapse I suspect he probably has entered the secondary progressive phase of the disease. To diagnose SPMS you really need to have a history of progressive MS for at least 6 months. When you speak to him about his cognitive problems these have been getting worse for at least 2 years. I have given him the benefit of the doubt and have offered him a DMT with a recommendation for going onto a highly-active treatment (natalizumab).”

"Please note that this gentleman has only had one documented relapse in the last 12 months. The other relapse that 'qualifies' him for treatment was subjective; i.e. a sensory attack with numbness and pins and needles in the feet associated with unsteadiness of gait in June or July of last year. During this relapse he had some difficulties going up and down stairs; he needed a handrail for support. Some of my colleagues would not have classified this as a relapse as he was not examined during the attack and hence it was not documented. Some would say that it was not a disabling attack as he was still able to function normally through it, nor did he require steroids or a hospital admission. This is not just semantics; in the UK we need two documented disabling relapses in a 12 month period to be deemed eligible for natalizumab and we need an active MRI scan as well. It is my policy to give the patient the benefit of the doubt and any relapse that affects normal activities of daily living is disabling. For a Londoner using the underground everyday, not being able to walk down the escalators is disabling."

“I can only wonder what would have happened if this young gentleman (he is only 32 years of age) was started on treatment at the CIS stage and had his MS actively monitored with relatively frequent MRI studies? Would we have prevented him from developing cognitive impairment? Would he be fully mobile? Would we have prevented his brain from shrinking? Would he have normally bladder and bowel function? Would his sex life be normal? Would he be depressed and anxious?"

" I sincerely hope by suppressing the inflammation in his brain and spinal cord his nervous system has enough reserve capacity to recover some function. I am not sure about this; my experience to date with highly-effective treatments in this phase of the disease is that although we suppress relapses and MRI activity progression continues for a few years before plateauing out. I have rarely seen much recovery when there is so much end-organ damage on MRI (atrophy). The plateauing-out observation is a relatively new observation of mine and at present is still anecdotal and needs to be confirmed in prospective follow-up series. I have referred to the hypothesis underlying this observation as the therapeutic lag-effect. I have posted on the therapeutic lag effect in the past. It is not well accepted by my colleagues; some are however supporting my attempts to look for it in existing data sets and to include it in their thinking about progressive MS trial design.”



“The following is a recent slide presentation of mine in which I promote early, highly-effective, therapy in MS. It explains why treat-2-target of NEDA is the rational extension of this approach and why we need a zero-tolerance approach.”



CoImultiple ; please note the specific details of the brief case scenario above have been change to make sure the individual patient is unidentifiable.

Labels: , , ,