Poole and Bournemouth Transverse Myelitis Support Group

Minutes of meeting 28th October 2006

Held at St George’s Church Hall, Oakdale, Poole

Teresa opened the meeting by welcoming everyone. Lew and Sally had travelled down from London, Rob from Wellington and Stacey from Plymouth. Rob had held a support group meeting in Somerset, and Stacy had attended. Lew mentioned that he had been to the last Manchester group meeting, where there had been 6 members attending, and informed us that there were about 30 members in the Telford group.

Fundraising was then discussed. £75 had been raised at our last meeting, and the committee had made the decision to open a bank account, with Sue Hyatt as treasurer. It had been decided to ask £1 subs each meeting to cover hall hire costs, which all members agreed would be a good idea. Teresa thought that any profit should be passed on to London, but Lew thought we should perhaps use it to subsidise any visits. Recently TMA had donated $35,000 to help with research at Johns Hopkins Centre.
Olga had submitted quizzes on 3 topics – local place names, nursery food and foods from different places. £1 per sheet was to be charged.
Valerie Young had very kindly donated hand made Christmas cards for sale, with profits to go our group.

Lew had placed an exercise sheet on the notice board, written by Piers, a professional trainer. The exercises would help some people to cope with fatigue.
Lew also mentioned that he had attended the seminar at Baltimore, and has produced a document explaining what he had learnt.
The Manchester support group had asked for any clippings the group had from news articles, as they are trying to get their group off the ground. They hoped to raise awareness.

A library of resources is to be set up, with Yvonne Trapp as the librarian. Over time it is hoped to have a range of books and DVDs with relevant information.

Teresa and Barbara are to visit the MS Day Centre at Parley to see what facilities they have and whether our members could make use of them, with an emphasis on physiotherapy.

The next year’s meetings are to be held on: 27th January
          28th April
          28th July
          27th October

Dr Hillier was then introduced.
He began by explaining about the long delays in seeing a neurologist at either Poole or Bournemouth. There are only 3 neurologists (himself, Dr Ellis and Dr Milligan) covering a population of 800,000.

He informed us that TM is considered as a 1 off attack, caused by inflammation of the Central Nervous System. The peripheral nervous system is where the nerve roots come off – Guillain-Barre affects that system. With a TM attack, the myelin becomes damaged. The brain stem can be involved although normally it just involves the spinal cord.
The name Transverse Myelitis is made up of myelo meaning cord, itis meaning inflammation and transverse describes the position of the inflammation.
It is not related to any specific group of people – it affects both children and adults. It is a rare condition, with just 300 new cases per year in the UK. This means that Neurological hospitals are likely to only see 5-6 cases per year.
It is caused by an enthusiastic immune system, where the body recognises the nerves as targets. The immune cells become activated – they see the myelin sheath as though it shouldn’t be there, and then strip off the myelin. This results in the nerve fibres either not conducting at all, or being reduced in efficiency. This means the messages are either delayed getting through or are non-existent.
It can be caused by a wide range of things. Infections are one cause, examples being Varicella zoster (shingles or chickenpox), Herpes, Cytomegalovirus (CMV), Glandular Fever Virus (Epstein Barr virus), Influenza, HIV, Hepatitis (A-E), Rubella, Bacteria, Mycoplasma infection. It is rare for the causative infection to be isolated.
Not all viruses can be tested for, because usually the virus has already been eradicated by the body. Antibodies can be tested, usually through proteins in the blood.
Another cause can be autoimmune diseases such as Systemic Lupus (SLE), Sjorgen’s Syndrome, Sarcoidosis or Behcets. It is rarely caused by vaccination, some cancers and MS (10%). A brain scan can be used to eliminate MS. Only one white mark is not likely to be MS – several areas of the brain could indicate MS. If there are several areas affected in the brain there is a 70-80% chance it will become MS in about 5 years’ time.
The symptoms could be acute in onset, in hours to days, or subacute taking 1-2 weeks. There are 4 classic symptoms, of which a patient may display one or all. These are weakness of arms or legs, pain, alteration of sensation, bowel or bladder dysfunction. Most patients will have weakness in the legs – ‘dragging’, stumbling or tripping, leg(s) feel heavy, or the legs can become so weak that the person needs a wheelchair. TM can only cause problems below the damaged area. The spine is divided into regions (see image). The TM diagnosis will indicate where the damage is done. For example, T12 is the bottom of the thoracic area, which affects the area below (legs, pelvic region).

                                        
Pain is the first feature in a third to a half of people. Back pain is often localised. Some words used to describe pain are numbness, tingling, coldness, burning, increased sensitivity to touch. There are treatments to relieve or disguise pain.
If the bladder and/or bowel is involved there may be increased frequency, a sudden urge, or inability to pass urine (retention), constipation, a sensation of incomplete emptying or no sensation at all.
TM can be diagnosed by a GP or A/E department, a hospital specialist or a neurologist. These people rely on being told the patient’s history, carrying out an examination and further investigations.
An MRI might show a lesion on the cord, although it doesn’t always show up on the scan. However, the scan can exclude other causes. Spinal fluid can be taken, which could produce inflammatory cells (normally these are less than 5 white cells, whereas in inflammation there would be between 20 and 100).
With regard to treatment, there is no effective cure. Treatments are designed to alleviate the symptoms. Steroids might be administered, often over 3-5 days intravenously, and then continued over 2 weeks orally. This can dampen down the inflammation. Nerve pain can be relieved by painkillers such as Gabapentin, Amitriptyline, and acupuncture. Spasticity can be helped by drugs, physiotherapy, injections to weaken overactive muscles. For bladder problems intermittent catheterisation can be used, or full catheterisation. Rarely stimulators are used – a computer box. The bladder needs to be completely emptied. There is a possibility of renal failure if the bladder is not controlled correctly.
Recovery from TM begins 2-12 weeks after onset, and recovery may continue for up to 2 years (regeneration of nerves may go on for up to 3 years). One third of people make a full recovery, one third a partial recovery, and one third no recovery.

Dr Hillier then answered questions.
What is Cervical Myelitis?
It is TM at the cervical region of the spine.
What is the connection with MS?
TM can be the first symptom of MS. However only about 10% of people with TM will go on to have MS.
Is there any medication for burning feet?
This sensation needs to be disguised. Some drugs used are Gabapentin, low dose amitriptyline and Carbamazepine.
Why isn’t there much information about TM?
All rare neurological conditions have little information, e.g. Motor Neurone Diseases and Guillain-Barre. GPs may only see 1 case in their whole career. They therefore need educating. Rare diseases get little research – 1 in 750 per year get MS, that is about 85, 000 people in the UK. However, the outcomes of MS research could lead to finding treatments to help repair TM damaged myelin.
What about FES (Functional Electrical Stimulation)?
This may help, as it stimulates muscles which are still strong, such as with foot drop. It works by wearing a box round the waist, with connections to the calf muscle which are then stimulated.
Can you explain more about recovery rates?
The first 6 months are a good indicator. If no recovery is made, then it is unlikely one will improve. However, if some recovery is made, this will continue. It is a slow process because myelin recovers at a rate of 1mm per month.
Why is it that when one is tired the symptoms seem worse?
An example of this is that there may be an 80% recovery of the nerves, but when one becomes tired or unwell decompensation occurs, making the person feel worse.
What about stem cell replacement?
This will not help with TM.
What is Lyrica (Pregabalin) used for?
It helps with neuropathic pain – it is a sister to Gabapentin.
What about goat serum?
There have been no factual studies carried out to collaborate any scientific evidence. It needs to be studied properly.
Is the whole width of the spinal cord always affected?
No. Half may be affected. This means that both sides of the body are affected, in different ways. For example, one could be weak on one side with lack of sensation on the other.
Why does it take so long for a review with the neurologist?
The lack of neurologists causes long delay. However, there are also 3 neuro rehab doctors in Dorset – Dr Emma Murphy, Dr Clare Murphy and Dr John Burn.
It might also be worth going on the MND website as they have produced a flip book for GPs. Teresa and Lew will look into this.
What if I need to change medication?
Go through your GP, who will then contact the neurologist for advice.
What about physio?
It is very limited on the NHS. There are private physios, but it is important that it is a neuro-physiotherapist.
Can I choose which hospital I go to in order to see a consultant?
Yes. With Choose and Book you can ask for a specific area, e.g. living near Winchester you could go to Poole.
What is progressive TM?
There is no such condition. If the symptoms are progressive, it is not TM.
Where can I get more information?
Through Teresa, or go on the web to either www.myelitis.org or www.brainandspine.org

A tea break followed, whereby everyone chatted, then the meeting closed.