Hey everyone
I’ve had a bit of a long and winding road to diagnosis, but at an appointment with my neuro this week, he said that the test results are finally aligning and MS it is. He then said as next steps, I will be referred to my MS nurse and they will do a another pre-treatment MRI and then start treatment straight away.
All fine, but the next appointment with the neuro has just come through for May (in 6 months time). Now I know as well as anyone how long this all takes, but I’m now wondering if I will have to wait until May to discuss the actual treatment (if this is the case, why didn’t we discuss options this week?!), or whether he will just ‘prescribe’ it on a letter to the MS team. Just wondering about your experiences.
C x
I tend to be a bit bolshy and I’m pretty sure that if it was me I would be going back and asking why I have to wait to start treatment especially as the general advice is that the sooner treatment is started the better ( and no I didn’t have to wait for another pretreatment MRI - and I would be asking what’s the purpose of another MRI , what on earth will it provide that an MRI some weeks after treatment won’t tell him/ her)
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This is what prompted me to put the question out on here. I questioned this additional MRI (which will be my third in six months) and he said it was to check for changes and then treatment will start. It sounded sensible at the time and neither me or my husband questioned it further (believe me, my husband questions everything!) I didn’t really think much more of it because I presumed this next step would happen pretty rapidly. It was only when I received the appointment letter today that I thought hang on a minute. I guess a referral to the MS nurse may still be happening in the background but it doesn’t look good for treatment before May does it?!
I would go back if I was you! I had to ask to be referred to a different hospital as the hospital that diagnosed me kept saying it was mild and didn’t need treatment! But once I saw an MS neurologist and he checked my MRI he recommended a high efficiency treatment due to the brain stem lesion. I started treatment a month ago, but was diagnosed December 23 and had a further 3 relapses before treatment started. I know have a foot brace and stick, bowel and bladder issues SVT and high blood pressure. You sometimes have to be pushy to get what you need, or fight for it. Hope you get on okay
Sorry to hear you have been left with so many issues due to the delay. My neuro is an MS specialist and there was no doubt that I will get treatment, it’s just the sequencing and timing of it all that I’m not sure about. I’ll contact his secretary tomorrow to see if she can shed any light on it.
Thank you, hope it goes ok speaking with your neurologist secretary. It does make a difference when you’re being seen by an MS specialist.
Hi there,
I think it depends on what kind of set up they have for the team. I’ve had appointments alternating between neurologist and the multidisciplinary team, so it’s entirely possible that the neurologist appointment that you’ve got isn’t going to be your next appointment, but that you’ll be seeing your MS nursing team before that. I think it makes sense to have had another MRI requested, one of the factors that determines which treatments you’re eligible for is how active your MS is. If he’s already got a couple that he’s looking at and suspect it might be highly active then another one would confirm it. Having said all that, often it’s not getting the MRI done that takes time but getting the reports done as there is a shortage of radiologists so it may well be that six months is realistic for your health board.
If you’re going to speak to your neurologist’s secretary ask her/Him if there’s a telephone number for the MS team. My team has a phone number with an answer phone, and I can leave a message asking for a callback. Most hospitals have them so that you can call up if you have an urgent relapse and need treatment fast. They’ll be able to answer all of your questions and give you a sense of what’s going on. Good luck with it all!
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Thank you so much for this advice. You’ve been incredibly helpful.
What you say about possibly seeing my MS nursing team before the May appointment is what I think I understood at the time too. So hoping this is the case.
I have been really lucky with MRI scans in my area. I’ve had each scan so far within a week of the neuro appointment and the results have returned within 2 weeks as well. Although I’ve probably just jinxed this one now! 
I already have contact details for my MS nurse because I was signposted to her via the MS Society helpline way back at the beginning of my journey. I was obviously undiagnosed at the time but to my amazement she not only responded to my email but also called me. My neuro mentioned her by name, it’s the same person so I will contact her again.
Cx
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Hi!
I’m in a similar situation to you, I got my suspected diagnosis back in September after this I had a confirming LP and MRI. Now… last week I got two letters, one for ms nurses next July and one for neurology clinic next September! But during my last appointment I was told I would start treatment after my test results. So I sent them email asking if I have to wait a year to be seen next. I then got a call from the MS nurses a couple days later. They told me my Consultant asked them to begin the work up process for starting a DMT, they also explained that the letters with appointment dates are just the yearly follow up and I will get a call from the Drs soon with LP/MRI results and specific DMT options. In the meantime they booked me to have lots of bloods taken and sent a letter to GP with all the extra vaccines needed (all this needs to be done before starting a DMT and can take several months). They also have me their 24/7 tel number and email. I am in the south west of England. If you have any questions let me know x
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Hey, thanks for this, it’s really helpful.
I think I’m just about getting to the bottom of what is going on and yes, it’s very similar to you. I was confirmed MS in my appointment last week.
I also now know that the neuro appointment I received for May '25 is indeed my annual (or in this case 6 months) review. These appointments are automatically generated hence why it came through so quickly.
I had another round of bloods taken at my neuro appointment last week and those along with this final MRI should be the last of the tests to determine which treatment is best.
Like you, I believe that when I receive the post appointment letter from the consultant, it will be accompanied by a referral to the MS nurses (who will then contact me straight away to begin the work up process for DMT), and a referral for the final MRI.
So I will now just sit tight for those letters to arrive.
Thanks so much for sharing and good luck!
C x