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Newly diagnosed, have questions!

Hi all,

My name is Steph and I’m 29. I was diagnosed with CIS aged 25 after experiencing Lhermitte’s sign and having an MRI which showed inflammation in my spinal cord. Having had lots of memory fog and 3 migraines with aura, I have had another MRI which has showed new inflammation in my brain and hence the MS diagnosis (Although my neurologist didn’t think the migraines were linked).

My neurologist has referred me to the MS nurse, any idea how long the referral should roughly take?

I have also just read that I need to inform the DVLA and my insurer, I have downloaded the form but there are so many questions on there that I can’t currently answer. Will it matter if I wait to see the MS nurse before contacting, or should I ask my GP how to answer?

Many thanks!

As for timescales, I got a diagnosis from Consultant Neurologist in Feb, appointment with MS Neurologist in April who took 2 months to write up the report containing diagnosis and a meeting (online) with MS Nurse in July. I notified DVLA on receipt of the MS Neurologist’s report. Your report has to specifically advise against driving for DVLA to act. My insurer was not interested until DVLA acknowledged my form. I’m still safe to drive and you may be too.

Seem to be significant variations in waiting times, depending on which NHS Trust you’re assigned to.

Good luck! :+1:

I believe it is mandatory to tell the DVLA on diagnosis whether or not there is a reference to fitness to drive in the report but you can definitely wait for the diagnosis letter.

I agree Moirah. It’s mandatory to tell the DVLA on diagnosis however the official diagnosis can take a while. My original diagnosis was from a Neurosurgeon who was eminently qualified and experienced, but the NHS is notorious for using the “another department, mate” mentality. A neurosurgeon of world repute wasn’t allowed to give me the diagnosis - that had to come from a neurologist. The first neurologist didn’t actually put it in writing either, though said it verbally. He referred me to a MS Neurologist, which in itself was a bit of a clue, but it was only when that Doctor’s report stated that I had MS was it official. I’d “known” for 6 months!

So, wait till you get the diagnosis in writing. If you can’t produce anything with the actual words, the people upstream at DVLA & Insurers wouldn’t know what to do with it.

I’m a bit of an ‘old timer’ but I was diagnosed 33yrs ago and after official diagnosis I told the DVLA and they put me on a 3yr licence and when that time was up they told me to see a doctor in harley street who did an examination and then I was put back on a normal full licence.

Hello Steph

Welcome to our happy band of MS warriors. (Although to be honest, some of us aren’t that happy really!)

You’ve had a bit of a journey to get to this point. To be honest, it’s not an unusual one. Lots of people have a similar start.

You could be waiting a while for the MS nurse to contact you. I suggest you phone your neurologists secretary and ask for the contact details of the MS nurse and call him/her/them.

As lots of other people have said, it’s a legal requirement to inform the DVLA of your diagnosis. Have a look at: Medical conditions, disabilities and driving - GOV.UK In the main, when diagnosed with MS, you’ll be given a 3 year license and have to complete a new form every 3 years thereafter.

Let us known if there’s anything else you need or want to know.

Sue

Thank you all, I’ve now had a letter through that I was copied in to from the Neurologist to my GP confirming diagnosis. It seems I am very lucky, the MS nurse has already booked me an appointment for next month.

In terms of the DVLA, I have downloaded the form from the website but am obviously not on any medication yet. Do I send off blank and then update them in a few weeks when I find out which DMT I am going on?

Thank you for all your support,
Steph

To be honest Steph, I doubt that your medication would make much difference re the DVLA. It’s more about your existing symptoms, damage to nerves and effect on driving. A DMD would generally just have positive effects.

So I’d just complete the form now, it’s straightforward enough.

In terms of your insurance, it won’t make a scrap of difference. So long as you have a driving license applicable to the vehicle insured, it won’t affect your insurance.

Sue