Notes from Doug Kerr’s Meeting 17th October 2007 in Glasgow
Doug started off saying how glad he was to be there and how London had been really ‘energising’ which I thought was a nice way to put it.
Margaret insisted to let Doug do his whole presentation before lunch (from 1130 until just after 1) with no questions (only a few). This allowed him to expand a lot more on several things (slides in his presentation that we never gave him time to do in London). For example he could explain the 6 criteria he uses to distinguish Recurrent TM. If all 6 are negative the risk of recurrence is less than 1%. If all 6 are positive the risk is over 70%. Normally if there is no second attack within two years, JH would consider the TM monophasic not recurrent. In Dr Kerr’s opinion MRI’s should be repeated every 3-6 months for patients at risk of recurrence or at risk of MS – he said that 80% of MS relapses are clinically silent and can only be detected on MRI.
He also talked about the experimental use of thalidomide and statins as well as EPO to break the chain reaction that is now known to cause TM. JH are going to publish a paper shortly on the successful use of thalidomide for two patients who failed to respond to steroids over a period of a month.
He went through a new paper they are going to publish soon (on the web for GPs) on how to treat acute TM (a sort of Treatment Decision Tree), based on 122 cases which fail to respond to steroids and also have high IL-6. JH is much more aggressive than UK neuros, making liberal use of plasma exchange (PLEX) and cyclophosphoamide (CP). The choice is based on the degree of disability at outset and the presence or absence of ‘systemic’ autoimmune symptoms i.e. rash, swollen glands, fevers.
Then he gave us a much longer explanation re stem cells. The Central Nervous System (CNS) was previously thought to be one of the few parts of the body lacking stem cells, but this is now proved to be incorrect. Your OWN stem cells (endogenous) in CNS are INCREASED by exercise (the biggest factor!) and DECREASED by stress, injury, sleep loss, depression. Doug then went through the two types of stem cell transplant JH are working on (1) Glial Restricted Precursor (GRP) cells to create new myelin and (2) the earlier experiment in rats to use embryonic stem cells to create new motor neurons to replace those damaged by TM. The GRP human trial (1) is now approved by the American government FDA. The first experiment is in babies with spinal muscular neuro atrophy in 2009. The second human trial is with TM in 2010. The embryonic stem cell transplant (2) is now being replicated in large mammals (pigs), prior to human trials. As on Saturday Doug is careful to point out that even when stem cells work to produce new myelin and neurons, it is still a long road back for the brain to learn to use them via physio and exercise.
Other questions came re persistent pain and possible remedies, and Sjogren’s Syndrome and other rheumatological conditions (key symptom = dry eyes). Campbell asked about the cognitive problems associated with ADEM, mainly short term memory loss. Doug mentioned that IL-6 caused cognitive problems in rats, and rats took about 12 months to recover – in human terms this is equivalent to 4 years, so he would estimate these problems could take 4 years to recover in humans. There was a brief discussion of TM in infants – Doug mentioned that infants never recur, and in many cases their recovery takes much longer than adults so parents should never give up hope of further recovery (and physio needs to be continued too). I asked a question myself regarding JH use of 4-AP fampridine, a drug to improve nerve conduction which I think I am going to try out on myself. Doug was very supportive and explained that he had tried it on 60-70 patients with 30% showing significant functional improvement.
(On a separate topic, Dr Kerr mentioned that JH was soon to publish a ‘cure’ for MS. JH took a large number of MS patients and treated them with a large dose of cyclophosphoamide (CP), a chemotherapy drug, to ‘reset’ their immune systems. Four years later, two thirds of the patients have had no MS relapses.)
Asked if Prof Angela Vincent treated any patients and Doug said certainly not. But, he said, she is regarded so highly at the Radcliffe that if she said TM patients ought to be treated more aggressively then there would be a few neurologists there ready to do her bidding. So Doug urged us to follow up with Prof Vincent as well as Anu Jacob, to try to define best practice in diagnosing TM (and Recurrent TM) and in treating TM.