Glasgow, Scotland
Meeting with Dr. Douglas Kerr, 17th October 2007

What a privilege to have Professor Doug Kerr come to Scotland to meet up with TM Scotland Support Group. We had been excited about the meeting since Doug took up our invitation in the summer and we met up at the Ramada Hotel next to Glasgow Airport.

The group was started in 2003 and now has 40 members, 25 of whom attended the meeting with Doug.  Represented were members diagnosed with TM, recurrent TM, Devics and ADEM, ages ranging from 3 years upwards.

Some of the group had dinner with Doug the previous evening including Margaret (Group Leader) who Doug re-diagnosed with a variant of Devic’s (LETM) and wrote a letter to her neurologist.
Margaret insisted the members let Doug do his whole presentation before lunch (from 11:30 until just after 1:00) with no questions (only a few). This allowed him to expand a lot more on several things (slides in his presentation that he never got 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 to break the chain reaction that is now known to cause TM. JH is 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 cyclophosphamide. The choice is based on the degree of disability at onset and the presence or absence of ‘systemic’ autoimmune symptoms, i.e., rash, swollen glands, fevers.

Then he gave us a much longer explanation regarding 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 transplants JH is 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) may be approved by the American government FDA in 2008 or more likely 2009. The embryonic stem cell transplant (2) is now being replicated in large mammals (pigs), prior to human trials.  The first experiment may be in babies with spinal muscular atrophy (SMA) and may be approved in 2010 or 2011. 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 regarding persistent pain and possible remedies, and Sjogren’s Syndrome and other rheumatological conditions. 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 regarding JH use of 4-AP, fampridine, a drug to improve nerve conduction which I think I am going to try out.  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 an aggressive new treatment for MS that may result in sustained remissions for some. JH took a large number of MS patients and treated them with a large dose of cyclophosphamide, a chemotherapy drug, to ‘reset’ their immune systems.  Four years later, two thirds of the patients have had no MS relapses, though some of the patients who did not relapse still had the development of new brain lesions.
 
Asked if Prof Angela Vincent treated any patients and Doug said he didn’t know. 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 neurologists there ready to listen. 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.

Each member had their questions answered by Doug, but the meeting sadly came to an end after 4:00 pm to allow Doug to get his onward flight.  Everyone agreed that it had been an unforgettable experience and a delight to get so much information first hand from Doug.  Sandy Smith gave a vote of grateful thanks and presented Doug with a wooden clock he had hand carved as a gift from the Group. Blair gave him a bottle of Scotch whisky and the Group gave Margaret Shearer a lovely bouquet of flowers.  All the questions made to Doug at the meeting and his answers can be found on the Scotland Group webpage on the TMA website.