Transverse Myelitis Society

Minutes of 20th Meeting London Support Group 17th January 2009

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

Next meeting: Saturday 25th April (AGM) same venue 2pm

Attendees: Jean Anthony (Treas), Wilma Atherton, Barbara Babcock, Mary Bergin and mum, Farshideh Bondarenko, Piers Bryant, Sally Dray, Anne Goddard and friend, Terry Glover and friend, Lew Gray (Secr), Amanda Harris (mother of Hugh H), Yvonne (Acting Chair) and Simon Kolesar, Therese Loh, Peter Payne, Ian and Jenny Pepper, Sally Rodohan (Chair) and husband Sean, Carmel Rodohan, Roy Smith, Edward Taylor, Dave Wolff

Apologies and best wishes received from: Clare Blake, Margaret Duggan, Ken Matheson, Cathy Mayer, Rob Reeves, Therese Rodohan

1. After some excellent sandwiches and other treats for lunch, we all sat down auditorium-style to listen to Prof Scadding, who had very kindly agreed to talk to us about neuropathic pain. I have attached Prof Scadding’s slides (and an earlier Q&A regarding pain from the MS Society website, with another neurologist). But Prof Scadding’s presentation went far beyond his slides and there were LOTS of interesting questions and discussion! At the end of his talk, Prof Scadding said he would like to stay involved with TM Society and help us further with his medical contacts. We are taking advantage of his very generous offer and a further meeting with the Committee is scheduled for March.

2. I will not repeat exactly what is on the slides, so the following are comments and questions meant to be read alongside the slides:

• Pain often does not occur at the outset, but develops later – meaning it is often missed or under-estimated. Particularly for TMers who are discharged early, it is important to bring medics’ attention to pain when it occurs or increases later on.
• On the other hand Prof Scadding said that neuropathic pain often gets better over years.
• Any of the 5 types of nociceptive (normal) pain can aggravate neuropathic pain, so it is important to have a holistic approach and don’t just address the neuropathic pain. This is why physio and exercise helps with neuropathic pain. ‘It is never too late to get input.’
• In answer to a question, Prof Scadding stressed that activity and massage cannot make neuropathic pain worse – the spine is well protected.
• Allodynia (slide 9) is unpleasant over-sensitivity on the skin eg to clothing.
• NB slide 12 – how pain can ‘take over your life’ and combine with low mood, poor sleep, reduced physical activity, social withdrawal – further aggravated when medical professionals don’t understand and react negatively.
• Prof Scadding agreed with other US speakers (on TMA website) that any given pain drug is only likely to be successful in a minority of cases, because (1) we don’t understand mechanism of pain very well and (2) we don’t understand mechanism of the drugs well either and (3) many trials have mixed central (TM) and peripheral neuropathic pain or been done with spinal cord injury, so the results can’t always be applied to TM.
• For example the NNT (Number Needed to Treat) for the anti-depressant drug amitryptiline is 4. This means the prescribing doctor will have to treat 4 patients before he gets 1 patient who achieves 50% relief of pain! Thus the large number of different pain drugs, and the need for persistence to find the right drug or combination – lesson for doctor and patient: DON’T give up!
• Among the anti-epileptic drugs (slide 15), only gabapentin has had randomised controlled trials to prove its effectiveness. There is no NNT for the other drugs.
• Prof Scadding thinks gabapentin is very good with minor side effects except for water retention in older patients. He pointed out that pregabalin (lyrica) was chemically very similar to gabapentin (although much more expensive) and he had had only 1 or 2 patients who seen a difference. [So perhaps the recent fuss about some PCTs refusing to pay for lyrica is misplaced?]
• Prof Scadding said another problem is that pain drugs DO stop working over time and therefore need regular review.
• In answer to a question about whether hydration levels affected the effectiveness of pain drugs, Prof Scadding said he did not know of any link.
• Someone on the TM Forum said that banding pain was actually caused by spasticity of small muscles in the trunk. Prof Scadding does not agree.
• Prof Scadding thinks surgery is inadvisable, can cause neuropathic pain later.
• Cognitive Behavioural Therapy (CBT: talking therapy) is ‘proven to work with pain, but not necessarily TM pain.’
• Pain Clinics offer the ‘gold standard’ in treatment and individualised approach. The British Pain Society (.org website) is the best source of information. (TM Society has an 80-page list of Pain Management Programs from the Walton Centre – there are 5 listed in London at 2006.)

2. After a vote of thanks by all to Prof. Scadding, we broke for tea and much chat. Thanks again to Yvonne for the excellent brownies and cakes. Then we re-convened in semi-circle style to have our usual Support Group update chat. Yvonne welcomed the several new members who were attending for the first time and welcomed back the regulars.

3. Ian Pepper talked about the onset of his TM in November 2007. One eye went blind, and then within 2 days his lesion was confirmed at T2 and he was transferred to Radcliffe in Oxford, where he had NMO blood test. In 3 months he was walking again. But he lost the sight in one eye after surgery. The doctors’ theory was that infective endocarditis in his heart had somehow triggered the autoimmune attack in CNS. Ian found out his diagnosis was TM from his GP’s notes! Neuropathic pain developed gradually over months as Prof Scadding mentioned. Ian was taking 3x150 gabapentin then switched to smaller dose pregabalin. He uses a pre-paid prescription card and finds hot water bottle effective.

4. Barbara Babcock was another new member who got TM in October, and was treated at St George’s Tooting. Her numbness moved down, then up, then around. Her main symptoms now are sensory loss in her hands and banding pain at night. She has worked on exercise and does hatha yoga. She first saw the word ‘myelitis’ in the neuro’s letter to her GP. She looked up the TMA website and was frightened by what she read there. Farshideh suggested that she might improve hand sensation by use of brushes, vibro massage, PowerPlate and shiatsu chair. Barbara is a trained NLP practitioner (Neuro Linguistic Programming) and offered to speak to the Group about NLP if we were interested. Barbara has also provided me with a special anti-inflammatory diet drawn up by Barbara’s mother in USA, a qualified nutritionist. If anyone is interested in having a copy of the diet (4pp) email lewgray@blueyonder.co.uk

5. Sally Dray gave us update. Sally is now on her 5th neurologist in 6 years. Her diagnosis is now neuro-sarcoidosis, and she is taking oral steroids. Her balance is her main problem now.

6. Edward Taylor is also having his diagnosis continually adjusted – peripheral neuropathy now.

7. Roy Smith has made a 98% recovery with only a numb patch remaining. But he knows he has to exercise - otherwise he deteriorates.

8. Lew Gray gave update. After 24 years of struggling with bladder, he has started ISCath and it’s working fine.

9. Amanda Harris spoke briefly about her son Luke who is now at Warwick University and cycling. At age 6 Luke was on a ventilator with TM!

10. Dave Wolff had huge back pain while driving 5 years ago, ended up spending 6 months at Haslemere Godwin Rehab Unit. After 2 months he could wiggle a toe. At 6 months he could walk but with no sensation and poor balance. Constant pain was the major problem, along with continence (using ISC) and UT infections. Dave went back to work after 9 months (runs his own boat transport company). He started a course of physio only 3 weeks ago. Neck and arm soreness causes poor sleeping. Farshideh suggested he try using a rolled towel to support the neck.

11. Terry Glover is another new member, had TM in June 2008. His main residual problem is pain in the bum which might be getting better. He also feels his legs are standing on pebbles, which seems to be getting worse. Terry says he has no ‘pain’ but is constantly uncomfortable.

12. Jean Anthony gave an update. She has had a second botox treatment. But then hospital insisted she use ISCath which resulted in UTInfection just as she feared originally. 14 years after her original TM, she believes her sensation is definitely improving.

13. Yvonne gave a brief report on her and Lew’s visit to give evidence to the ABN/RCP investigation into local neurological services. We told the committee we spoke to, that doctors’ ‘empathy’ and lack of specialist nursing were the main gaps in services. The neurologists seem to accept that there is no good reason why MS nurses should not help patients with TM since the symptoms are mostly identical.

14. Several members wrote in to say thanks for the link to Prof Clare Fowler’s article re Bladder Treatment. Serah Gautrey (St Ives Cambs) added:-

 “I have just had my 2nd set of Botox injections and I can't tell you how much better life is being "in control" of my bladder and not my bladder being "in control" of me!  If you ever want to cover this subject I would be happy to answer any questions as I understand UCL have a number of TM patients on the trail. As for my bowel issues the Anal Plug by Coloplast has help there too!
 
This year will be my 25th year coping with the symptoms of TM and its had its highs and lows and to think I was 13 when I was hit seems like only yesterday but the one thing I hope is that younger sufferers with long term symptoms have to not go through what I did for many years of having no support.”

15. Clare Blake has written in to say that 5 years her original TM she had an Optic Neuritis and has not been re-diagnosed with MS but would like to stay on as TM Society member.

16.  Next meeting is 25th April (AGM), same venue at 2pm