Receiving the Diagnosis
Many doctors feel that to tell patients they have MS on the basis of one lesion is unfair. People who have a single episode of transverse myelitis (spinal cord lesion) or a ‘clinically isolated syndrome’ (CIS) for example have a low rate of progression to definite MS, at least over a five year period.1 Having lesions on initial MRI at the time of the episode of transverse myelitis makes the development of definite MS much more likely.
Many doctors feel it would unnecessarily worry the patient to discuss the possibility of MS. But until patients become aware that they may have MS, they can’t begin to do anything about it. There is a whole range of things that can be done, that have either been shown to work, or look highly promising. Patients need to know what is likely to be wrong with them, and what they can start doing about it. For all of the therapies, both natural and pharmaceutical, there is growing evidence that the earlier the treatment is started, the better the outcome.
Elian and Dean, in the Lancet in 1985, showed that people overwhelmingly want to be told they have MS after diagnosis.2 Only 6 out of 167 surveyed MS patients preferred not to be told. More recently a very large Greek study reported that of 1 200 people with MS, 91% favoured being told immediately, yet only 44% had.3 For 27% it took longer than three years to be told.
Likewise the guidelines for the management of MS issued by the UK National Health Service National Institute for Health and Clinical Excellence (NICE) recommend that ‘if a diagnosis of transverse myelitis is made, the individual should be informed that one of the possible causes is MS’.4 While the diagnosis of MS is ‘considered one of the most life-altering diagnoses a person can receive’5, it is important for the person to know what they are up against. As one newly diagnosed person with MS noted, ‘the potential challenges of the journey ahead have to be viewed with realism, optimism, and meaning’5, and this journey can’t begin until you know what you are facing.
Many doctors feel it would unnecessarily worry the patient to discuss the possibility of MS. But until patients become aware that they may have MS, they can’t begin to do anything about it. There is a whole range of things that can be done, that have either been shown to work, or look highly promising. Patients need to know what is likely to be wrong with them, and what they can start doing about it. For all of the therapies, both natural and pharmaceutical, there is growing evidence that the earlier the treatment is started, the better the outcome.
Elian and Dean, in the Lancet in 1985, showed that people overwhelmingly want to be told they have MS after diagnosis.2 Only 6 out of 167 surveyed MS patients preferred not to be told. More recently a very large Greek study reported that of 1 200 people with MS, 91% favoured being told immediately, yet only 44% had.3 For 27% it took longer than three years to be told.
Likewise the guidelines for the management of MS issued by the UK National Health Service National Institute for Health and Clinical Excellence (NICE) recommend that ‘if a diagnosis of transverse myelitis is made, the individual should be informed that one of the possible causes is MS’.4 While the diagnosis of MS is ‘considered one of the most life-altering diagnoses a person can receive’5, it is important for the person to know what they are up against. As one newly diagnosed person with MS noted, ‘the potential challenges of the journey ahead have to be viewed with realism, optimism, and meaning’5, and this journey can’t begin until you know what you are facing.
- Scott TF, Kassab SL, Singh S. Acute partial transverse myelitis with normal cerebral magnetic resonance imaging: transition rate to clinically definite multiple sclerosis. Mult Scler 2005; 11:373-377
- Elian M, Dean G. To tell or not to tell the diagnosis of multiple sclerosis. Lancet 1985; 6:27-28
- Papathanasopoulos PG, Nikolakopoulou A, Scolding NJ. Disclosing the diagnosis of multiple sclerosis. J Neurol 2005
- National Institute for Clinical Excellence. Multiple sclerosis. Management of multiple sclerosis in primary and secondary care. London: National Institute for Clinical Excellence, 2003
- Fawcett TN, Lucas M. Multiple sclerosis: living the reality. Br J Nurs 2006; 15:46-51
- Scott TF, Kassab SL, Singh S. Acute partial transverse myelitis with normal cerebral magnetic resonance imaging: transition rate to clinically definite multiple sclerosis. Mult Scler 2005; 11:373-377
- Elian M, Dean G. To tell or not to tell the diagnosis of multiple sclerosis. Lancet 1985; 6:27-28
- Papathanasopoulos PG, Nikolakopoulou A, Scolding NJ. Disclosing the diagnosis of multiple sclerosis. J Neurol 2005
- National Institute for Clinical Excellence. Multiple sclerosis. Management of multiple sclerosis in primary and secondary care. London: National Institute for Clinical Excellence, 2003
- Fawcett TN, Lucas M. Multiple sclerosis: living the reality. Br J Nurs 2006; 15:46-51