How long is too long when it comes to being diagnosed as having MS and starting a DMT? #ClinicSpeak #MSBlog
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.
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.
People attending the teaching course thought a 9 month delay in getting onto a treatment to be far too long. The reality of this is that 9 months is way above average in the UK. A recent survey showed that on average it takes over 8 years from initial symptoms to get diagnosed with MS. This pathway is relatively typical for the NHS and most of the delays in the path of this patient are within lower limit of what is typical for a busy NHS service. You may be surprised to hear that this patient was actually fast tracked through several stages of the pathway.
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.
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?
CoI: multiple
Too long! I would expect to be diagnosed and on treatment within 4 weeks, ideally 1-2 weeks.
The first of several unnecessary delays I see is in step 7. I believe more should be done to be able to arrive at a diagnosis of definite ms rather than CIS. Too many people are denied treatment in an attempt to stop the ~10% of people who will never develop definite ms from taking on unnecessary risks associated with DMTs. But that's 90% of people who will potentially experience suboptimal disease control because of a delayed diagnosis.
why is 4 weeks an acceptable wait time for an MRI (aka 8 weeks when you need 2 MRIs?)When I need to, I am able to obtain an MRI appointment for my partner within a week, paid by Medicare. I'm obviously not in the UK or the US.Why should 4 week wait for an MRI be acceptable? Do you think your politicians wait 4 weeks when they need MRIs?
Sadly the first and second cases are pretty much par for the course. I realise two attacks are required for a definite diagnosis, but you would think with the diagnostic tools available for the medical profession in 2017 it would take less time for a diagnosis.I particularly feel for the patient in the first case, I had a similar onset except I presented more dramatically! Interestingly enough my first attack was in 1998 so perhaps diagnosis, or lack of, hasn't changed much in 20 odd years?
If you think this is good for the NHS then you to look at yourselves in the mirror. You should ask the how the Mayo and Cleveland Clinic would perform. They would get this all done within 2-3 days.
The Mayo Clinic and the Cleveland Clinic are two of the most expensive healthcare providers in the world. If you aren't wealthy these two options are out of reach to you. The NHS represents the most efficient/cost-effective socialist healthcare system in the world. Your comparison is unfair. What about comparing it to Veterans Administration? Which system offers the best value?
Out of interest, why was the patient offered DMF or alemtuzumab and not one of the CRABS at that point?
She was offered the CRABs as well and Teriflunomide, but the list was reduced to two options by the end of the consultation.
What specific studies were done in the first MRI? I assume that the first MRI was without contrast.
Could the second MRI series been ordered at step 7 with/without contrast? The CIS would be sufficient to order additional scans, in this case sounds like an active site would show proving two attacks separate in space and time.
36wks and if U choose Copax which has 6-9 mnths, your ms will untreated 15-18 mnths. My sister has Ms and loose 15 mnths from first sympthom to diagnosis and more 15 while she took copax (snake oil). She failed with Tec but had posterior fossal progression. We fight for the switch cause her life was so devastating, so finally we switched to Gilenya. MS seems much calmer after 16 months but she has residual deficiencies (some behavioral changes nystagmus balance issues) so her EDSS is 3,5 after only 4,5 years. I hope Gilenya helps and put her ms into long term remission cause her neuro and the others are snake oil fans so the potential switch to Tysabri and Lemtrada would be very complicated
I hope the presenter isn't suggesting Alemtuzumab treatment at first presentation? If not, the "delay" starts from week 18. More realistically, following completion of investigations at week 30. I assume the LP was performed for a diagnostic purpose. The delay is therefore 6 weeks.
are you trying to say that people who risk irreversible brain damage with each day that passes should wait 4 weeks for an MRI? Worse still, they should have to wait 8 weeks for 2 MRIs to be done?I felt and still feel hard done by because my partner had to wait from initial diagnosis in August to February before she started her first DMT. The logistics of the exercise in her case were not the problem – I rang every MRI clinic within an hour of us and had an appointment within the days. I did the same with the neuros and eventually with a public MS clinic. The delay in my partner's case was due to a misdiagnosis of PPMS and being sent home without meds. I think it's outrageous and I'm very annoyed that due to some lazy doctor's eagerness to diagnose PPMS (without the 12 month evidence of progression) led to a new lesion on her brain stem that she may not have had if she had the opportunity to start a DMT earlier. I wrote to the PPMS neuro later (after my partner's diagnosis was confirmed to be RRMS). He got defensive and told me neurologists have different opinions.
ProfG can I suggest you do a survey to assess what is an acceptable delay?
It seems reasonable to me..with some caveats…if the GP suspected ms then why a general neurologist? This caused delay and I guess repeat tests..If using the McDonald criteria for diagnosis then some waiting is surely inevitable
Where do patients in denial fit into all this? I had balance symptoms, like periodically not being able to walk downstairs without holding a handrail, for five years before my partner suggested very forcibly that I go to my GP. My reactions to standard reflex tests were odd enough that the GP referred me straight to a neurologist. He sent me for an MRI and gave me a diagnosis of MS within a month. I didn't believe I had the disease and he told me there were no treatments for MS (Beta Interferon had been around for a year or two, but he didn't know about it). I'm sure I would have refused treatment if I'd been offered it, since I was in denial about having the disease …
denial is a personal thing. you have some element of control over how you deal with bad things in life. you do not have the same element of control inside the medical system.
denial is a personal thing. you have some element of control over how you deal with bad things in life. you do not have the same element of control inside the medical system.