I am an English lady living in Ireland and was diagnosed officially with RRMS last week, ive found the whole process here very frustrating and wonder if i would have received better care if id been back in the UK. I had to wait a year for an MRI scan, despite an apparent urgent need, only to be told that if id had private insurance i would have been seen in a couple of weeks which did not help how i was feeling at all! And that leaves me wondering if my prognosis might be better if id been diagnosed and treated when i started having symptoms. Anyhow, im symptom free at the moment so im trying not to dwell on that, i jsut fancied having a rant! So i just wanted to know what a normal course might be from symtpoms to diagnosis and treatment offered? I had an mri and lumbar puncture for full diagnosis and will be starting the DMD Avonex. Would this be the normal course followed in the UK also?
Hi I have just been diagnosed recently with a CIS and from seeing Neurologist to diagnoses it took 4 months I also had 2 mri a lumber puncture which did not work (it was awful) Im also on Avonex. Ive had excellent care from the NHS so far with this. Im in Scotland by the way.
Hi. My first symptom was 13years ago with at least 3 relapses a year ever year since, I was told 10 yrs ago that its was 75% chance of MS, got an unofficial DX Jan of this year and had my official DX 2 days ago!! I wil be having DMD’s just in process of decision making! Steph
PS I now live in Leeds but moved from Lancashire 6 years ago Steph
Hi Steph Thats a hell of a long time to be having all those relapses and only starting on dmds now!..hope it all goes ok for you and cuts your relapses…Emma x
Having looked at the length of time some of you get any official reply as to whats wrong i think ill just trundle along with whatever it is i have currently, 13 years is a long time from beginning to actually being dx’d!
A year for an MRI is diabolical so we definitely have Ireland beaten on that one!
The normal first step is a GP referral to a neuro. The wait to see a neuro varies - anything from a few weeks to several months (I believe it’s as long as 6 months or even more in some places). Neuro referral to MRI / other tests. Getting these done could be anything from a few weeks to a few months, depending on availability. Then it’s the wait for the neuro appointment for the results. This could be anything from a few weeks to a few months (or more). If you don’t meet the criteria, it’s come back again if anything changes. If you do, then you are put in touch with an MS nurse (they don’t exist everywhere in the UK though) and, if you meet the eligibility criteria, you are put onto a DMD. Getting the first delivery can take anything from about 3-8 weeks (maybe more), after you’ve told them which one you want. This assumes that the first neuro is able to diagnose MS - sometimes they will refer the patient to an MS specialist before confirming it’s MS. This can add several months. It also assumes that the GP believes the patient and gives a referral without any hassle - the reality can be very different from this. Also, quite a lot of people go around various consultants before ending up in neurology so obviously that can delay things.
DMDs have been shown to delay the onset of disability if started within the first couple of years, so it’s best to get started asap. I’d be pretty peeved if I had a whopper of a relapse and the only reason I hadn’t already been on a DMD that might have prevented or lessened it was that the queue for the MRI was too long!
Karen x
Hi. My case is probably one of the differant ones. I was 13 when it all started and that’s one of the reasons it took so long. I never had enough lesions to dx until recently (i also have some in my spine now as well) hence why I couldn’t start on any DMD’s so I have had intense steroids nearly every year since I was 13. Steph