Transverse Myelitis Society

Minutes of 10th Meeting London Support Group 9th September 2006

At Old Board Room, National Hospital for Neurology and Neurosurgery (NHNN), Queen Square, London WC1

Next meeting: Saturday 2nd December same venue 130pm

Attendees: Jean Anthony (Treas), Piers Bryant and friend Helen, Martin Bye and friend Paul, Margaret Duggan and husband Doug, Chris Fordham, Lewis Gray (Secr), Maureen Hodgkinson and friend Jean, Yvonne Kolesar, Carol Lodge, Kenneth Matheson, Sally Rodohan (Chair), Therese Rodohan, Carola Schachtschabel, Roy Smith

Apologies received from: Sue Bridge, Teresa Bryant, Susanne Carr, Angela Dunbar, Gaynor Eyles, Karina Garcia-Casil, Cathy Mayer, Cindy Morelli, Jack Pennington, Carmel Rodohan, Margaret Shearer, Geoff Treglown, Loretta Turner, Susanna Van Langenberg, Sally Wilkinson

General Charity News

1. After a welcome by Sally Rodohan to all attendees, Sally and Lew presented some topics of general interest to all members. Jean Anthony has taken over as Treasurer very successfully and accounts are up to date. The Irish Night and Medici Choir Concert fundraising events were very successful. Over 200 members are now receiving publications by email, which has reduced the work of sending them out, and also allowed us to send more info more quickly, eg Project Restore Newsletter from Johns Hopkins.

2. Many thanks to Yvonne, who made some excellent sandwiches and superb homemade pastries for tea.

3. Lew attended the 2006 Symposium at Johns Hopkins in Baltimore USA. He has written a 4-page summary of the Symposium which is available to any member on request (email lewgray@blueyonder.co.uk ). Lew gave a quick verbal summary to the meeting:

• Johns Hopkins really did seem to combine clinical work (looking after patients) with research. Moreover they had managed to combine their work on TM and MS. Very impressive.
• There were 3 clinical trials at JHTMC: (1) monitoring brain in new TM patients to find physical evidence of depression and cognitive dysfunction, (2) drug trial of EPO (erythropoietin) on 40 new TM patients in addition to IV steroids, (3) drug trial of lyrica (pregabalin) to see if it helps spasticity as well as relieving pain. The recent discovery of IL-6 which causes TM has stimulated a lot of new areas to research, to interfere with the newly discovered disease progress.
• Although the recent breakthrough with stem cells in lab rats is very significant because it is the first time that function has been restored (not just cells), JHTMC estimate they are still 3-5 years from applying for human trials. Main problem is danger of stem cells causing tumours.
• There were excellent presentations on treatment of pain, and we hope to use the information about drugs to compare treatments in US with UK.
• The big ‘new idea’ in research is ‘neuroprotection’ strategies. After many years concentrating on the initial inflammatory phase of TM, neurologists have now realised (via better MRIs) that much nerve damage occurs later due to axon degeneration. Researchers are trying to find out how to stop this.

Importance of Exercise (speaker)

4. Piers Bryant gave a talk on The Importance of Exercise. Piers (now 33) is a personal trainer by profession. He got TM 3 years ago and the neuros were very discouraging. Originally he couldn’t keep his balance standing in shower and suffered from terrible banding pain. But over 12-18 months he built himself up to the point where he can run 10km. He still has poor sensation in his legs and knows all the problems (feet falling off the exercise cycle etc). But even if exercise didn’t promote return of function and fitness – which of course it does – it would still be worthwhile because it promotes a positive mental attitude which every TMer needs.

5. Other members spoke of their own experiences. Ken Matheson swears by swimming which he has done for 54 years since he got TM. Yvonne Kolesar rode a horse every day before she got TM, and agrees with Piers that exercise is vital for recovery.

6. Piers offered to do a handout of recommended exercise which we will circulate. In response to a question re fatigue, Piers said ‘It’s OK to feel tired after exercise, as long as you feel better the next day.’

New Members’ Experiences with TM

7. Martin Bye got TM in June 2005 with very quick onset (20 mins). He was referred from Whipps Cross to NHNN and treated by Dr Charles Clark. His lesion was at C2-C3 and both legs and left arm only were affected. He took carbamazepine for 3 weeks for burning pain in arm. Martin managed to return to work in Sept and by October the consultant was very pleased with his walking. However he never mentioned TM as the diagnosis until May this year. Martin’s left leg still drags but is still improving – although he couldn’t move it at all for 3 days at the beginning he never lost strength in the leg.

8. Carola Schachtschabel has only had TM for 2 months. Her symptoms were mainly banding pain (better now) and loss of hand strength (not getting better and this is very disabling for work and life in general). She was referred to Radcliffe in Oxford but had to wait 5 weeks. One neuro told her TM was ‘common’. She has had MRI but doesn’t know the result. She is worried that neuros are taking her condition too lightly.

9. Maureen Hodgkinson lives only 5 miles from Carola. She was referred to Radcliffe as well. MRI showed lesion at T12-L1. Only 1 leg was affected, with foot drop and banding pain. She was discharged walking with 2 crutches – but her flat is up 17 steps! Fortunately she is getting physio twice a week at least until her next appointment with neuro in December.

10. Chris Fordham said he was still improving. He had consulted a homeopath who told him to avoid wheat in his diet, gave him little pills with a cocktail of 7 remedies and charged a lot. Ken Matheson mentioned he was booked to go on Expert Patients Programme course, which Sally had already attended last year. Piers Bryant mentioned he too had had carbamazepine (like Martin Bye) for 6-8 months and he thought it helped a little with sensation in his legs.

11. Lew mentioned the MS Society was running a FOC workshop on 27th September a.m., re Managing Spasticity with a specialist nurse and physio. The workshop was at the MS National Centre which is near Staples Corner (North Circular Road / M1 junction). Any members who are interested to attend should contact Lew for more details.   

12. £90 was collected ‘in the hat’ to contribute to meeting cost. See note at top re next meeting 2nd December 130pm.