Transverse Myelitis Society

Minutes of 17th Meeting London Support Group 19th April 2008

At EC Harris HQ, 34 York Way, Kings Cross, London

Next meeting: Saturday 12th July same venue 2pm

Attendees: Jean Anthony, Andy Beales, Anna Campeau, Gabby Chelmicka, Helen Considine, Jodie Douglas, Sally Dray, Ann Goddard and son Adam, Lewis Gray (Secr), Yvonne and Simon Kolesar, Rob Reeves, Sally Rodohan (Chair), Therese Rodohan, Roy Smith, Rob and Jane Stevens, Edward Taylor

Apologies received from: Wilma Atherton, Clare Blake, Farshideh Bondarenko, Margaret Duggan, Angela Dunbar, Abby Evershed, Mike Fishwick, Denise Garforth, Jean McBeth, Ken Matheson, Glen Palfrey, Carmel Rodohan, Fran Rourke, Martin Stanley, Betty Storey

TM Society Annual General Meeting

1. After a welcome by Sally Rodohan to all attendees, Sally handed over to Yvonne to chair the AGM. Yvonne presented a short summary of the TMS’s activities and achievements in 2007. The first-ever UK TM Conference in October had been a great success according to members who attended (95% positive feedback), although we had been disappointed by the UK speakers’ cancelling (due to date conflict with MS Conference in Prague). The TMS Committee had done a wonderful job organising the Conference and thanks were due, also to the many family members and friends who had volunteered to assist.

2. In 2008 we planned to build new contacts among neurologists and invite speakers to Support Group meetings in July and October. We would hope to have another TM Conference with Dr Kerr in 2009. Awareness of TM was still very poor and we would continue to work on this.

3. Many thanks were due especially to Sally and Therese who handled all Newsletter printing and posting, and also to Geoff Treglown who sent New Members Packs for all Europe. Also to Support Group leaders around UK: Margaret Shearer (Scotland), Teresa Bryant and Barbara Houston (Poole), Anna Paulsson-Habegger and Kelvin Holmes (Telford), Angela Dunbar (Berkshire), Rob Reeves (Southwest), Jan Ashenden (East Midlands), Mike Fishwick (Northwest) and Andy Gardner (Kids List and Yorkshire). Also to the many members who had made financial donations.

4. Angela Dunbar resigned from the Committee due to travel problems, although she stressed her willingness to help on projects, as she had done with Conference Brochure design in 2007. Jean Anthony, Lew Gray and Yvonne Kolesar all stepped down by rotation after 3 years on the Committee. Jean, Lew, Yvonne and Jane Stevens were nominated, seconded and elected to the Committee. Additional positions on the Committee were still open if any member was interested to join.

5. Lew Gray (Secr) gave a report. Lew clarified that all members of TM Association in UK were automatically members of TM Society and entitled to vote. Due to Geoff Treglown’s health problems and Sally moving offices following takeover of her company, there might be problems in 2008 with TMA Journal and Newsletter printing and posting. Lew thought we should have a key objective to build a Medical Advisory Board of neurologists interested in TM in UK. Regular letter and telephone correspondence with members was continuing. Suggestions from members were invited re possible grants system and/or UK Newsletter to replace emails. Teresa Bryant was planning to hand over Poole Group leadership to Mary Bergin.

6. Jean Anthony (Treasurer) presented 2007 Accounts. Due to members’ accepting publications by email, our expenses for posting them had been further reduced to less than £1000. The Conference had been almost break-even, mainly due to speakers’ all giving their time for free. Our fundraising had leapt forward to over £7000 (£4000 one-off donation from Andy Gardner’s Yorks trade association Xmas party). The Xmas cards had almost covered costs of printing and we had cards in stock for 2008. Altogether this generated another healthy surplus of over £7000. Jean had moved some monies into CAF interest-bearing deposit account. The Committee has authorised £1000 donation to Project Restore and we were also hoping to donate toward Walton Centre new A.D.D. Clinic and TM research in UK, following meeting planned soon with Dr Anu Jacob.

7. Following tea break (excellent food provided by Yvonne), the 17th meeting of the London/Southeast Support Group took place.

London/SE Support Group Meeting – Members’ Experiences with TM

8. Yvonne welcomed new members to the Group, and invited everyone to tell their story/update.

9. Ann Goddard was recently diagnosed with TM. She started off with pins and needles, went to A&E who thought she might be having stroke or orthopaedic prolapse. MRI was done but showed nothing. CSF showed nothing either. Then after 5 days she saw a neurologist Dr Hart at St George’s Tooting. She then spent 2 weeks in St Helier Hospital but doctors were worried about side effects so she had no steroids. Her mobility has improved but she suffers from extreme fatigue and burning pain in one leg, cold feeling and dyesthesia (painful touch) in other leg. Her diagnosis reads ‘partial Browns Sequard Syndrome following idiopathic TM.’ She had pregabalin for spasms but it made her woozy, and also took codydramol for pain. Ann said there was a 17-week wait for the hospital neuro-physio at St Heliers. She was advised to write a letter of complain but she was too fatigued.

10. Sally Dray gave an update. Dr Patrick Trent in Guildford had referred her to Prof Thompson at Queens Square. After 12 months Prof T recommended another neurologist Dr Geoff Gawler at Barts. Sally had 5 MRIs but they showed nothing new. Her TM originally affected her arms but was now getting worse affecting legs and her balance.

11. Edward Taylor also felt his legs were getting worse. He was recommended to have a nerve conduction test but this was OK.

12. Helen Considine was going to Farshideh Bondarenko (Ealing) for physio. She felt Farshideh had done some great work helping her with the position of her eyes and head. Helen had managed to get referred to Dr Diane Playford for rehab, but she was disappointed that Dr Playford won’t deal with new neurological symptoms and she was looking for a new neuro.

13. Andy told the story of his wife Helen Beales (who was not present). She started in 2004 with severe pain in neck and arm, weakness in legs, altered sensation etc. She was treated with IV and then oral steroids and recovered 100% after one year. But recently she had a recurrence and was treated with oral steroids and gabapentin, by Dr Chataway at St Marys Paddington. He took new MRIs but they showed no changes. He speculated that her recurrence might have been triggered by a dose of doxycycline antibiotic. Helen’s symptoms are different every day. (She has kids aged 5 and 9.) Stress seems to worsen symptoms. Gabapentin has improved her sleep, and symptoms seem to be improving gradually.

14. Rob Reeves (ADEM) emphasised how it TAKES TIME, learning how to deal with fatigue and pace himself. He tried going to gym twice a week, but it proved to be a bad idea.

15. Jodie Douglas got ADEM two years ago in June 2006.Originally the medics thought she had food poisoning, then appendicitis, then she was finally admitted into A&E in agony from back pain, with loss of feeling in her legs and unable to stand. Steroid treatment was used but deemed ineffective as the paralysis was still creeping upwards and she had difficulty breathing. So a more aggressive treatment (plasma exchange) was done. Now she has found a really good physio named Martin in West Hampstead. She has even managed to do some snowboarding on a holiday with friends. She is not quite strong enough however to do carpentry work which was her job before.

16. Robin Stevens gave an update. He had a dodgy left arm and paraparesis (weakness) in both legs. His GP tried oral steroids, before he was referred to neuro Dr Previtt in Southampton. Unlike Sally’s experience, Rob had found Prof Thompson VERY helpful as 2nd opinion.

17. Jean Anthony has recently gone to Gait Analysis Centre at St Mary’s Roehampton. She thinks they may recommend an orthotic for her, which might help with the shooting pain she suffers.

18. Lew gave some news from Poole Group, who planned to have O.T. speaker re fatigue management for their next meeting on 26th July. All are invited to attend. Ask Lew Gray for time, directions etc if you want to go.

19. Lew showed new article An Approach to the Diagnosis of Acute Transverse Myelitis, written by a UK neurologist named Dr Anu Jacob at Walton Centre Liverpool. The TMS Committee were seeking a meeting with Dr Jacob, to see how we could support his new Atypical Demyelinating Disease Clinic and any proposed research. This is the first article we have ever seen on TM, authored by a UK neurologist!

20. Provisional dates for next two meetings in 2008: 12th July, 18th October.