We are running one our MS teaching courses this week, which is heavily case based. I presented a patient of mine that was recently diagnosed with MS and it took her ~ 9 months to be diagnosed and started on a DMT. Do you think this is too long? Too short? Just right?
The following is her path with the approximate timings of her clinical course.
- First symptoms – sensory attack in feet migrating to legs over a few days
- One week later saw GP who felt the symptoms were possibly due to a virus.
- One weeks later her sensory symptoms worsened and she developed an MS hug.
- She saw her GP who referred her to a local neurologist.
- She was then seen by local general neurologist within 4 weeks; MRI ordered.
- MRI was done 4 weeks later.
- She saw the general neurologist 2 weeks after MRI and was diagnosed with CIS (clinically isolated syndrome) and recommended to come back in 6 months time.
- 6 weeks later had brainstem attack with vertigo and ataxia
- Saw GP with a week who diagnosed labyrinthitis due to a possible infection.
- She did not improve and arranged to see neurologist urgently; she was seen by the neurologist 2 weeks later who diagnosed probable MS based on this being a second attack,
- She was then referred to MS centre for an opinion regarding diagnosis and treatment.
- Seen by MSologist 6 weeks later who requested repeat MRI and lumbar puncture to exclude MS mimics (this is part of the diagnostic criteria for MS).
- She had to wait 4-weeks for her second MRI and lumbar puncture.
- She then had another 4 week wait to be seen by MSologist again, who made a definitive diagnosis of MS and offered DMTs. She went away from clinic to make a choice between DMF or alemtuzumab.
- She had a further 1-week period to read literature and come to a decision about which DMT to go onto..
- She came back to see MS clinical nurse specialist to discuss treatment choice and have baseline blood and urine tests.
- There was a 1-week period wait for the pharmacist to process NHS paperwork so that we could start her on DMF.
- She was finally started on DMF ~9 months after initial symptoms.
In comparison the second patient I presented on the teaching course had a very different time course and took over 10 years to be diagnosed with MS and was eventually started on natalizumab. During the 10 years he acquired a large lesion burden that subsequently had major consequences for him; he had to be medically retired 3 years ago because of issues related to cognitive impairment.
As an active proponent of ‘Time is Brain’ any unnecessary delay should be avoided. The question is what delay do you find acceptable?