I was diagnosed in July,I have had all my immunisations and still can’t start treatment until 30 days after last immunisation. I saw my specialist on Monday and yesterday received message for video consultation on 14 November. I don’t understand why this is happening. Why can’t I start my treatment i don’t understand and my life is on hold til I start treatment.
Hi,
Your experience is not unusual, unfortunately. I was diagnosed also one July, after years of battle to get there. My treatment did not start until the January after.
Part of the problem is neurology waiting lists. There are shortages all through the system and it sometimes feels like the sense of urgency in other areas (like cancer) is lacking.
The “30 days after last immunisation” rule may be to ensure that immunisation has had time to take effect. Once you start treatment, your response to immunisation could be blunted - so that sounds like a safety precaution. They’ll also probably have a presentation to give to you about the drug, its side effects etc., that’s probably the video consultation. Then there’s the waiting list to get the appointment to actually start…
Probably not much you can do except to emphasise to them, when you have your video consultation, that you would be willing to come in at short notice if they get a cancellation.
In terms of life on hold, anything you can do that will occupy your mind might help. Dwelling on the urgency just makes it feel longer.
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Thanks all for your advice. I really appreciate all your advice.