Transverse Myelitis Society

Minutes of 18th Meeting London Support Group 12th July 2008

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

Next meeting: Saturday 18th October same venue 2pm

Attendees: Jean Anthony, Wilma Atherton, Piers Bryant, Jodie Douglas, Ann Goddard, Lew Gray (Secr), Yvonne and Simon Kolesar, Margaret Rees, Rob Reeves, Sally Rodohan (Chair) and husband Sean, Carmel Rodohan, Therese Rodohan, Roy Smith, Davena Wilson and husband Nick

Apologies and best wishes received from: Hilary Barefoot, Andy Beales, Clare Blake, Farshideh Bondarenko, Zoe Brown, Lorna Cherry, Sheila Demery, Graham Doughty, Sally Dray, Margaret Duggan, Abby Evershed, Elizabeth Havard-Williams, Ken Matheson, Cathy Mayer (went to old venue Queens Square by mistake!), Emma Murray, Peter Payne, Jack Pennington, Milisa Savic, Annie Schofield, Martin Stanley, Betty Storey, Jane Thurlow, Loretta Turner

1. We were all very pleased to see Sean Rodohan walking into the meeting with a single stick, and talking with everyone. Sean is making a very good recovery from the stroke he suffered in January, and is still getting physio 4 times a week at home. All the Rodohan family send their thanks to all the members who asked after Sean and sent best wishes, over the past several months.

2. After some excellent refreshments (thanks again to Yvonne) and a brief welcome by Sally Rodohan to all attendees, Sally handed over to Yvonne to chair the meeting. Yvonne made a couple of announcements:

• Yvonne’s husband Simon – much against her better judgement – is going to jump out of an airplane with a friend and ‘sky dive’ with the Red Arrows on 2nd Sept near Nottingham. Simon has very kindly decided to donate 25% of his sponsorship proceeds (overall target £25k) to TM Society. (Many members will recall that Simon expertly chaired our 2007 TM Conference in London.) More details of how to sponsor Simon and other fundraising events will be circulated during August.
• Yvonne has recently spoken to Prof John Scadding, an expert in neuropathic pain, and he has agreed to come and speak to our 17th January 2009 meeting. Prof Scadding appears very warm and approachable and should be an excellent speaker for us.

3. Lew and Yvonne gave an explanation of the new TM research which the TM Society has agreed to fund (£10k), to be carried out later this year, by Dr Anu Jacob at the Walton Centre in Liverpool. The research takes the form of a ‘clinical review’ in which Dr Jacob will investigate the treatment and outcomes for 200 TM patients diagnosed over the past 5 years at the Walton Centre. [NB Dr Jacob is speaking at Northwest Support Group meeting in Liverpool on Thursday afternoon 4th September where he is happy to answer questions.]

Dr Jacob is experienced in this area. He started his career at Walton Centre by carrying out a national search and review for all patients (only about 50 in UK) diagnosed with NMO/Devic’s Disease (2002-06). Then Dr Jacob spent a year at the Mayo Clinic in USA doing NMO, TM and MS research, went to Johns Hopkins and met Dr Kerr, and has now returned to UK as a Consultant Neurologist, written an excellent article on TM which members have already seen, and set up a new Atypical Demyelinating Diseases Clinic at the Walton Centre.

Dr Jacob believes that treatments for TM by most neurologists are ‘traditional’ and lack an evidence base due to small number of cases and lack of research. He aims to design a Questionnaire to research diagnosis, treatment and outcomes, which might include some of the following:-

• How long from initial symptoms to TM diagnosis?
• Early warning signs eg flu,herpes,stress,exhaustion?
• Time to treatment? How many days of IV steroids? Compare outcomes.
• Sub-types of TM? IL-6, NMO-IiG blood status, length/position of lesion from MRI?
• Rehab provided: How soon? How long? What type?
• Social services eg housing modifications?
• Employment status (how long off work, does employer know)?
• Government benefits (DLA refused?)?
• Degree of recovery from nadir?
• Ongoing symptoms and treatments – which work and which didn’t?

This research might be followed up with a nationwide study, possibly using the TM Society membership database, which we might call phase 2. However it should be noted that this year’s study (phase 1) will use up 2/3rds of our cash in the bank, so we would be wise to plan some fundraising for this year in order to have the cash in hand for a possible phase 2 research project in 2009.

4. A couple of other questions were raised by members in emails:
• Jack Pennington would like to know if any other members suffer from Crohn’s Disease in addition to TM. [The recent book by Donna J Nakamura The AutoImmune Epidemic, with foreword by Dr Kerr, makes the point that autoimmune conditions often ‘come along like buses’.]
• Graham Doughty a new member from Rainham Kent is having trouble getting his insurance company to recognise TM as a ‘critical illness’ and pay out. He has already received advice from John Nash in Brighton who overcame a similar problem and from Margaret Shearer in Scotland.

5. Lew Gray asked the members present if any of them had seen their GP regarding their TM in the last 6 months and had their GP been able to assist? The 3 newly diagnosed members were the only ones who answered Yes. Wilma added that she had tried to get assistance from her GP but he was ‘useless’.

6. Ruth Wood a TM Society member from Birmingham has written an amusing 71-page book about her experience with TM. Any members who want to preview the book or buy it as an e-book (only £3.50), go to this link http://www.lulu.com/content/3003509  A few members read it in draft and we recommend it!

New Members’ Experiences with TM

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

8. Margaret Rees has had TM for 17 years but only found her diagnosis 2 years ago! Her consultant at Queen Elizabeth Hospital Birmingham retired and notes were lost. Her new consultant working without notes told her she had TM, wrote a letter to her GP suggesting he try pregabalin for her residual symptoms.

Back at the beginning 17 years ago, she felt pins and needles on one side only. Her GP said it was a peripheral nerve problem. It got worse and then better over the next 3 months. After 4 months she had X-ray and then had 4 weeks in hospital with suspected MS. She was given steroids and told she had 50/50 chance to recover leg strength. But the steroids made her depressed [was it the steroids?]. She was in a wheelchair for 6 months, got back on her feet, never had any physio, raised 3 kids.

9. Wilma Atherton gave an update. She had electrodes (?) test for MS at Charing Cross but results were negative. Her neurologist thinks that hormones from her pregnancy triggered her relapse (3 years ago). She still struggles with fatigue.

10. Davena Wilson was diagnosed in November 2007 in Derby although she lives in South London. She was exhausted and felt tingles rising up her body and banding pain. Since she had had spinal fusion operation previously she went to her surgeon but he said no link. Her GP was useless, but her sister worked at St Helier Hospital and took her to A&E who did blood test and lumbar puncture and discharged her with pain killer drugs which were useless too. At some stage she was treated with 3 days IV steroids. Her lesion was found at C3, causing pain in her hands. She saw a Dr Hart (neuro) privately, but her blood tests were not covered (by private health insurance?). She suffers from heavy arms, tries to exercise by swimming. Stress makes her symptoms worse.

11. Dates for next two meetings: 18th October, 17th January 2009 (Prof Scadding speaker).