[markjholdenParticipant]

hello I’m Mark

diagnosed June 2014.

STC Feb/Mar 2015

Remission until May this year.

Can’t say I wasn’t gutted when I found out it was active again but I don’t have the excruciating back pain I had the first time round (I cannot recommend Mr Sean Malloy at the Royal National Orthpaedic Hospital,Stanmore).

what I have had continually is peripheral neuropathy in my feet and this seems to be getting worse with the revlimid.

I am concerned about telling the DVLA.  It is listed as a notifiable complaint but my feet are more sensitive rather than less sensitive and I have no problem driving. I am not being selfish to other road users as I would stop driving immediately if I thought I was a danger.

my concern is that if I flag it up the decision would be taken out of my hands but if I don’t tell them I am breaking the law…

can anyone tell me what the procedure is when you report it?

grateful for any help

M

[GentliParticipant]

Hi  Mark – can I just check your comment re Mr Malloy at The Royal National Stanmore – did you mean you cannot recommend him enough?  The reason I am asking is because I am looking for a recommendation for a consultant spinal surgeon as my husband has had pain 24/7 from his surgery in 2009 – most likely related to muscle issues, scar tissue and not the titanium holding his spine in place.    I am sorry I am unable to answer your question regarding the neuropathy.   Best wishes.  Liz

[markjholdenParticipant]

Liz

I have just re-read my posting and I seem to have said the complete opposite to what I meant.
Mr Malloy was brilliant with me.  I meant to say I cannot recommend him highly enough. Continuous back pain is horrible and I’m sure it is making life difficult for both of you.

Give him a try, he is always very busy though.

Best wishes to you and your husband.

Mark

[jeff605Participant]

Hi, haven’t posted for a while, decided to wait and see what would happen after I highlighted my Neuropathy to my consultant group after giving it low rating in importance until I came across this post when having a catch up session. I was concerned about the DVLA aspect. Since then it is having a much more negative effect on my abilities to drive and live – difficulty in operating and find the control pedals to an extent where I have had to stop driving even my auto car, for example. I am also having falling and unsteadiness , and really have to watch every step and vertical movement I make. At my meeting last week the very thourugh consultant came to the conclusion that I was more or less stuck with it, although booking me for some neurological tests to confirm the diagnosis not to expect a cure ! So, I am in the process of looking at hand controlled cars – atm my hands have minimal symptoms, and surrounding myself with walking aids. Now, assuming that I find a vehicle to suit, do I need to inform the DVLA? Incidently, life being governed by the infamous S-ds law, both the consultant and myself found it strange that this co-incided with excellent Myeloma results, had the magic words ” stable very good remission” in writing. Ah well, no-one said it would be fair or easy ! Interested in anyone else’s experiences with neuropathy and it’s path , wishing you all the best in our life with this so – individual cancer, Jeff

[andygParticipant]

Hi.

As far as I know if you have peripheral neuropathy you have to inform the DVLA it doesn’t automatically bar you from driving though I think not informing them could have consequences regarding insurance etc. It’s my Dex night so I’m going to do a bit of research and will hopefully get back with what I can find out.

Every day is a gift.

Andy

[andygParticipant]

`Hi.

Just copied this from http://www.gov.uk

 

Peripheral neuropathy and driving

You must tell DVLA if you have peripheral neuropathy.

You can be fined up to £1,000 if you don’t tell DVLA about a medical condition that affects your driving. You may be prosecuted if you’re involved in an accident as a result.

Car or motorcycle licence

Fill in form CN1 and send it to DVLA. The address is on the form.

https://www.gov.uk/peripheral-neuropathy-and-driving

I guess the safest thing to do is inform the DLVA I’m sure most people will still be able to continue to drive once the medical details have been check.

I hope this helps.

Every day is a gift.

Andy

 

 

• This reply was modified 7 years, 11 months ago by  andyg.

[jeff605Participant]

Hi, Andy, thanks for the information,  I will download the form and send it off, I have booked the car in to have hand controls fitted later this month, and bought a scooter lift to make things easier.  I certainly wouldn’t consider continuing to drive the car as I am and it is, the risk of hitting something or someone is far to likely to happen!  Now my granddaughter has had a liver transplant will have to get her driving for me!

Thanks again, take each day as it comes,  get up and get on with it, is my motto!  Jeff xx

[andygParticipant]

Hi Jeff.

I didn’t know until recently that it was a notifiable condition. Fortunately when I was on Velcade, two cycles, I didn’t get it bad just a little loss of sensation in my fingers and toes.

Every day is a gift.

Andy xx

[lynnedixonParticipant]

Hi, I’m new to the forum so hopefully you’ve had a decision from the DVLA since you posted  in December.

I was diagnosed with Myeloma and AL Amyloidosis in 2015. I had severe motor and sensory neuropathy caused by Amyloidosis, chemo plus the stem cell transplant followed and I’m now in remission from both. I reported it to the DVLA who wrote to my Neurology Consultant for a report on my condition. The outcome was that I still have my car licence but the C1 category has been taken off me for 3 years, I can then reapply if I want. The category C1 is to drive transit size vehicles under 7.5 tonnes.  As I’m now retired I don’t think I’ll be needing this again anyway!!

Hope this helps, good luck

Lynne

[jeff605Participant]

Hi, nice to hear from you.  Sofar I have had acknowledgment of my letter, and no decision yet. Bit irrelevant atm as I can’t drive,  as I’m not mobile enough to get to the car let alone drive it! Glad you have kept your licence,  it really is a trial not being able to drive, makes every thing difficult.  Regards, Jeff

 

[taffdParticipant]

The start of my diagnosis began when I collapsed at the wheel. Luckily, I was parked at the time – I was a taxi driver. Anaemia. Been prone to it for years but hadn’t realised my count was so low.

Thing is, there’s no specific level that’ll cause a blackout, so I decided there and then that I’ll never drive again. I’ll not endanger others for my convenience.

If you  have PN, or any other condition that may affect your driving, you know you’ve got to report it, so do so. (This is not aimed at anybody in particular)

My sympathies lie with those suffering with myeloma; irresponsible behaviour gets none.

[Author]

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