Transverse Myelitis in UK Diagnosis Transverse Myelitis is not very common in the UK. It is estimated there are only about 300 cases a year. That means that on average a GP will encounter a case of TM once every 100 years! If you are one of those people with acute TM (where the condition comes on in a few hours), your GP will have referred you to your local hospital A&E. However if the symptoms come on slowly over a number of months, your GP might be forgiven for not spotting TM as the cause
The same may be the case at your local hospital A&E, unless it has a neurology department. Getting access to a neurologist is part of the NHS postcode lottery. Regional Neuroscience Centres provide an area-wide service, and most neurologists cover several NHS hospitals on a once-a-week basis. But in the UK there are only 350 consultant neurologists for the whole country, ie 6 neurologists per million of population. In the USA by contrast the figure is 40/million and in Denmark 100/million. The Neurological Alliance (a consortium of neurological charities) is pressing hard for an expansion of neurological posts in the NHS.
When TM is eventually confirmed (sometimes after many months or even years), this does not really help you. TM is only a name given to a set of rare symptoms. The cause is not known. A cure is not known (though around two-thirds of sufferers make a fair to good recovery). Who will be afflicted and who will recover seems to be a matter of luck, of chance, an act of God, …
After diagnosis, the patient enters a wait-and-see stage which will be very depressing for some. Acute sufferers may find after a few days that muscles which cannot be exercised (because there is no control of them) start to waste away. At this point the affected parts of the body may become skin and bone — the ‘chicken’ phase. While waiting to see if there will be some recovery in the spinal cord, physiotherapy becomes very important. It is essential that the affected muscles are exercised (passive or active) for as long as possible every day, to prevent them wasting away completely. The more they are exercised, the more muscle is retained and the quicker any recovery will be.
Information and Support
The best information about TM is found on the TM Association website www.myelitis.org , of which this page is a part. TMA information includes scientific and medical articles about TM and related conditions (ADEM, Devic’s Disease or NMO, Optic Neuritis), their causes, diagnosis and treatments. Other information includes Frequently Asked Questions, articles with advice on symptom management (eg chronic pain, continence, depression), video presentations from Symposiums, internet forums for members and further contacts.
TM sufferers, carers, friends and family are all invited to Become a Member of the worldwide TM Association, by clicking the link on the UK home page. Membership is free of charge. All new members will receive an Information Pack by post, and then subsequent TMA publications: the TMA Journal (once per annum) and TMA Newsletters (twice per annum), by email or by post if requested. TMA members living in UK are automatically members of the UK TM Society as well, and receive UK news, information and invitations to local support groups by email or post if required. All TMA and TMS staff are unpaid and there are no membership subscriptions for either organisation, so donations are welcome to cover our costs of providing information and support.
The UK-based Brain and Spine Foundation publish a number of booklets explaining different neurological conditions and also run an excellent telephone Help Line staffed by experienced neurological nurses. We recommend the BSF booklet as the best general introduction to TM. There is a link to download the booklet on the UK home page on this website, or you can ring BSF on 0808 808 1000 to request a free copy by post.
Other UK-based sources of information include Incontact for information and assistance with bladder and bowel incontinence. Incontact offer a free booklet (ring 020 7700 7035) and have a good website www.incontact.org
The Spinal Injuries Association have much useful information on their web site www.spinal.co.uk - select Information and then Factsheets. The booklets and factsheets on bowel (38 pages) and bladder (19 pages) incontinence give much more detail than the Incontact booklet. They can be downloaded from the website or requested by post (020 8444 2121).
Many other useful sources of information can be found elsewhere on this website or the main TMA website. Recovery
Transverse Myelitis is a condition and not an illness. There is no cure. Recovery is in the hands of nature. The first signs of recovery may appear after three or four weeks. Progress is likely to be slow and often continues for about six months though, with some, further improvements may occur over 18-24 months. Recent advances in knowledge of the brain and nervous system have revealed that the system is even more ‘plastic’ than was previously thought, so that the brain finds new pathways to repair and bypass neurological damage, using mechanisms that are poorly understood. So it is important to realise that no one (including neurologists) can accurately predict any individual’s potential for recovery. A positive mental attitude is important for recovery.
Therapy (both occupational and physiotherapy) is essential during the recovery stage. However recovery won’t just happen, without a very considerable commitment on the part of the patient. Hours spent exercising every week may be wasted if tackled half-heartedly. You will have to assess your own personal objective. Do you want to be back into the outside world again, or are you going to be content shuffling backwards and forwards between the loo and the armchair in front of the TV? At this stage no personal effort equals no recovery! However you must be aware that many TM sufferers, both in the recovery stage and afterwards, find that they tire very easily. Some people will need to plan their physio carefully to do numerous short sessions, and after recovery they may need to set time aside each day to rest for an hour or so. Where can this therapy be obtained?
Spinal Injury Units and Neurological Rehabilitation Centres offer intensive courses for those with the commitment to try to get themselves better. Sadly many patients with extensive TM never get to one of these. If you have lost the use of limbs, you need to get to one of these as soon as you can. You need to be referred by your hospital neurologist and you may need to press your case quite hard, or go to a private unit. Some treat in-patients and others only out-patients. Some are part of the NHS while others are private organisations. A few that we have heard of are detailed in the Therapy Centres page on this website; please tell us of any others that you know about. If you are looking for a good physiotherapist, we suggest you pick a physiotherapist who is a member of the Association of Chartered Physiotherapists Interested in Neurology see www.acpin.net . Make sure your physio is a neuro-physio.
For those who recover only very limited use of limbs, electrical stimulation may help. More information about this ttechnique can be obtained from The Department of Medical Physics, Salisbury District Hospital, Salisbury SP2 8BJ (01722 336 262 ext 4065). Ask for their factsheet on Functional Electrical Stimulation (FES). This technique is especially successful in helping people with ‘foot drop’.
It is easy to lose the mobility that has been hard won. It is essential to keep exercising. Some like to walk, trying to get further each week. Others prefer hydrotherapy and swimming. Ask at your local swimming pool/health centre to see if they offer sessions for the disabled. You don’t need to be able to swim to make good progress with supervised hydrotherapy. Horse riding is also good for improving balance and many riding centres/clubs run courses specifically for the disabled. Look up Riding Schools in the Yellow Pages and then phone the club to enquire. |