Hello, I saw my neuro today as I’ve had a numb hand for the past few weeks. I’ve been having ongoing tests as he suspects MS, including a LP last (which I haven’t had results back from yet) however he said that the numb hand is confirmation enough.
He said I didn’t need to tell the DVLA or my car insurance provider about MS but I don’t think this is true.
He’s referred me to the “MS Team” who will conduct further tests and to have another MRI, so I’m not sure whether that referral means I officially have MS or not. Or if it’s up to the MS team to actually “rubber stamp” me so to speak. As such I’m not really sure if now is the right time to inform DVLA and my car insurance provider or whether I should wait to see the MS team? I’m nervous about the DVLA putting short timeframes on my license and my insurer hiking the price to a point where driving becomes un-affordable. Obviously, I know I need to tell them but just aren’t sure if doing it now is jumping the gun.
I’m late 20s and suspect I have RRMS but the symptoms are (currently) minor so I don’t see any problem with me actually driving.
hi ashsplash
you DO need to notify DVLA.
your insurance company is unlikely to charge more, if they do ask on here for insurance companies who are ms friendly.
you will be put on a 3 year licence.
carole x
Hi ash splash,
im in exactly the same situation, I’ve been referred to ms specialist, again been told I’ve got ‘inflammatory brain condition’ maybe ms, I have lesions and have just been dealing with a bad period of new systems, including numb face and possible optic neuritis. I’ve not been told about contacting Dvla, although I’ve just been given steroids and I’m not driving whilst my vision is being affected. I’ve just had Vep test, and I’m due a further mri in next couple of weeks. I’ve had a call from ms team secretary saying will see me as soon as Mri is done. I’m in the UK, currently under north staffs.
Dusty66
Sounds like we’re at exactly the same point in the journey @Dusty66. I also recently had a VEP. Thanks @carole, I’m just a bit unsure as to when I tell them. Noone’s told me “you have this type of MS” so I don’t think I’m “officially” diagnosed yet. I may be wrong and I know there’s probably about 0.0001℅ chance it’s something other than MS but I’m not sure I should tell them until I have a piece of paper or whatever it is makes it “official”.
I find it all a bit frustrating just don’t know who I should tell, if anyone ref driving etc. My neuro is not an ms specialist but has referred me on the fast track diagnostic route to ms clinic, once I have had next Mri I’m due to meet with ms specialist to discuss all of the results. They have an ms specialist centre at north staffs, which hospital are you at in the uk?
I’ve been going to Gloucester which have been pretty good so far, waiting times have been longer than I’d have hoped but at least this are moving forward. They’ve got an ms team there too which is who I’m going to be meeting.
Hello AshSplash and Dusty66
You both sound like you are in the same position as I was in two years ago. I had been referred to a neurologist after a suspected relapse which left my right arm numb and not able to use my hand.
Back then I was having tests for this and tests for that and not getting any concrete answers from anyone. I was told to report any “relapses” to my MS team, but the problem was, every time I reported a relapse I was told it wasn’t a proper relapse and not too worry, only come back when you have a “disabling” attack. The problem is, I did worry and this was the catalyst of a very dark period in my life. I’m over that period now, thank god and although I have been diagnosed with MS I am doing very well.
Like you, I was told to tell the DVLA that I was being investigated for MS. I thought to myself why? They are only testing me for MS, its not confirmed. I get migraines, so what, I don’t have to tell the DVLA that I might possibly have a brain tumor (I don’t thankfully). I was given a three year medical licence, which will expire at the end of November. I can still drive and have not had any further relapses or any problems yet .
One thing I would strongly recommend is that you do your homework and look at what neurologists there are available in your local areas. I found that my local MS specialist centre and neurologist at the time did not want to offer me a diagnosis which meant I was unable to be offered a DMT.
The healthcare trust 10 miles down the road were more proactive and my neurologist (once I reffered myself to him) looked at my doctors note, medical history and gave me an MRI. Which led to my diagnosis within two months of referal. This meant I was eligible for a DMT and finally gave me some answers and the chance to fight back against the disease.
Look at your options if you want an answer, remember, the squeaking wheel gets the oil.
Good luck
Ok, so I phoned DVLA for a definitive answer, I essentially asked “Do I need to notify you that I’m being investigated for MS, or should I wait until I get an actual diagnosis”. By asking the question they logged it on the system and said I need to send in the CN1 (Multiple sclerosis and driving - GOV.UK) within 21 days or my licence will be revoked (I had to give them my name and address etc at the start of the call).
They’ll then contact my doctor and ask if they think I’m fit to drive, she then said “if your doctor’s happy, we’re happy”. So hopefully I should be fine!
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Spoke to my insurer (Privilege) who were great about it, they said “They’re DVLA led so as long as DVLA are happy for me to have a licence it makes no difference to them. If at any point the DVLA suspend or stop my licence I need to tell them” they also said I don’t need to tell them if I get put on a 3 year licence (but I probably will for full disclosure).
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Hi,
I’ve just been diagnosed recently so told everyone, but just so you know with regards to insurance they aren’t actually allowed to ask you what your medical condition is anymore, just whether you have one (you’ll notice this on all comparison sites and I was told when I phoned up mine to inform them). It’s how they get around not being discriminatory, even though I then had to find a new insurer because they refused to continue my cover and the same would have happened had I changed address or car or any other detail. Yea right, I’ve changed plenty of things mid policy and its the only time it’s been discontinued!
Sounds like a typical Swansea bureaucratic foul-up to me.
You have to notify them if you are diagnosed as having MS, and you should notify your insurance company at the same time.
I used the same letter for both, changing the addresses to suit.
Technically, the insurance notification is on account of a “Material Change” and failure to inform them is a possible breach of contract (making it a civil law issue)
Swansea will ask you to send your old licence back - do not do this. You are supposed to use a letter from them as a licence, but at the time I was travelling to France and the USA regularly and did not wish to explain to a Gendarme or Highway Patrol officer why I only had a piece of paper, not a photo licence. They have never asked for my old licence again.
My advice is to write to them, stating that you are under investigation, and asking when you have to inform them. That way you will get a written reply, not just an anonymous voice on the phone. Don’t mention your phone enquiry.
To show you how good they are, they have taken away my licences for anything bigger than a 7-seater people carrier, but left me with my licence for a main battle tank. 1.5 tons is a no, no, but 50 tons is still permitted.
Geoff
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Thanks Geoff, I actually sent the CN1 off yesterday as they were clear that there was now a timer on my licence. The doctors info was about all I filled in though. Everything else was none/unknown/na so I guess they’ll just contact my doctor. I did however tick yes for MS but for the date of diagnosis I wrote “diagnosis still unconfirmed” let’s see what they say!