Peripheral Neuropathy & Driving

[skylark15]

Hi, Community.

I am 72 and have Lupus, Raynaud's, Erythromelalgia, Peripheral Neuropathy and Muscular Dystrophy, Type 1.

Neurophysiological testing in 2016 showed evidence of a "large fibre peripheral neuropathy of the axonal type". EMG, also in 2016 showed " relatively mild longstanding chronic neurogenic changes".

I was told in 2017 by my then neuromuscular consultant that as long as I informed DVLA that I'd been diagnosed with Muscular Dystrophy, he was quite happy for me to continue driving. I rang them and they recommended that I submit a letter confirming that advice. I received back (after some time!), a letter from DVLA to say that I could continue to drive. But that was only about the Muscular Dystrophy.

Does anyone else have this collection of conditions? Has anyone else declared peripheral neuropathy to DVLA and if so, what was the outcome? Thanks.

[EOLHPC]

🤩good question❣️ Been wondering too…my set of Dx includes sural axonal peripheral neuropathy, EM, severe Raynaud’s ischemia reperfusion injury of feet + SLE, the ultra rare Chilblain Lupus Erythematosus which severely affects the feet, sjogrens, small vessel vasculitis, hEDS & the usual secondaries. I do have a disabled parking badge, but I seldom do drive anywhere anyway

But the other day I read what the DVLA website says about disability & decided I am not officially categorised disabled + my vehicle hasn’t in anyway been adapted to any disability + am functional enough…+ of course don’t have an official Dx like muscular dystrophy, so am thinking I can avoid going into all this with the DVLA.

Now I feel sure your post will help me understand this better, so I’ll be following this discussion with interest

💞💞💞💞 Coco

[alybill]

I recently found out if you have glaucoma you need to let the DVLA know and I did. Some weeks past then the DVLA sent me a form which I completed and returned the same day. Again several weeks had passed then I received a letter telling me I had to get a DVLA eye test at Spec savers and a medical with my GP. I managed to get an appointment at Spec savers were my visual acuity with and without glasses on. The optician was not interested in any of the paper work I had which included my opticians test about three weeks ago. I was then passed onto member of staff to do check my peripheral sight. All the results were loaded onto a page and I had to sign it, it was sent to the DVLA right away. My optician’s test was more involved and took roughly an hour, spec savers took 30mins and that included waiting time

I went to see my GP the next week took a sample of urine but it wasn’t needed he had a form to fill in. New Gp and I told him about the peripheral neuropathy (PN ) which was well documented in my notes and previous Gp, Addenbrooks and Ipswich pain clinic were all aware of it. He filled in his form and I assume it was posted that day. That was about 2 weeks and I’m just waiting for the DVLA’s report.

I had previously informed the DVLA re PN but the glaucoma I never knew about! I mention just to alert other people re rules of DVLA.

Best wishes to all, just another thing we have to deal with, and the lost goes on!!

Alison

[skylark15 in reply to alybill]

Hi, Alison.

Thanks for your reply. DVLA are slow, aren't they. What a tricky route you had to take, to get this far, too.

I'll keep my fingers crossed ffor you, for a positive response (eventually) from DVLA.

Tess

[EOLHPC]

So, there’s news re the DVLA’s response to my renewal form giving details of my peripheral neuropathy. I completed that for m online on 19 July.

Then on last Saturday 5 August i got a letter from them that says nothing about my PN, but demanded I rush to complete & return their enclosed 8 page for asking a lot of questions about me eyes, which is odd cause my eye conditiions are not on the DVLA list of Dx they want reported (I have what my recent 6 monthly eye clinic report specifies as : “Bilateral aqueous deficient Dry Eye + Bilateral secondary ocular surface inflammation (aka Filamentary Keratosis) well controlled with topical cyclosporin”)

So I filled the form in & posted it off yesterday. Expecting to hear back from the DVLA saying I’ve got to go through what alybill/.Alison has described above….but who knows!

Will try to remember to reply here with news re whatever happens next, but this Thursday am due to have another spine op, so 🤷🏼‍♀️

Skylark: have you heard back from the DVLA yet? 💞💞💞💞 Coco

[skylark15 in reply to EOLHPC]

Dear Barnclown,

Thanks for update. No, I haven't heard from DVLA. I keep expecting a letter but nothing so far, nor in my Spam folder (!).

It'll be interesting to see if they do send you on the same sort of less than fun roundabout as Alyhasd to do.

Like you need any more time/brain space filled up with filling out DVLA forms! All the very best for the spine operation on Thursday.

Tess xx😚🍀💞

[EOLHPC in reply to skylark15]

😆👍😉💞💪🍀🤞✌️

[alybill in reply to EOLHPC]

News update on Wednesday 16th August 23 I received a letter from the DVLA saying they were satisfied that I was fit to drive and would be rechecked at “sometime in the future “, and they will let me know! At least now I am legal to drive. The worrying thing is that many people and I include myself are not aware of all the conditions that you need to report to the DVLA. As they say “ignorance of the law is no defence “ means you could be liable for costs and may include your car insurance being null in void and in trouble with the law/police. I put this note on this forum as I know some other people may find themselves in the same circumstances. Keep healthy and best wishes to all. Carry on driving.

[skylark15 in reply to alybill]

Hi, Alybill.Thanks for the update and I'm so pleased for you 😊 .

I've posted my latest news from DVLA above, in reply to Barnclown. The wait goes on...

Txx

[skylark15 in reply to EOLHPC]

Hi, Coco.

I hope the op went ok.

A couple of days ago, I had a letter from DVLA to say that they had written to my Neuromuscular consultant and that they would be back in touch " in due course".

I am waiting for a letter or an appointment for repeat testing to drop through the letter box...

T xx

[EOLHPC]

💞thanks for this update! Hope things go smoothly🍀✌️

I haven’t heard anything more since I returned the CN1 only with my PN details …nothing to re the DVLA form that came later by post asking about my eye conditions. I actually wonder if they know these 2 forms relate to one case, ie mine 😆

Spine op went ok (aside from the anaesthetist zapping my eye full of lidocaine meant for the cannula 😝, poor thing…I just said: don’t worry, just irrigate my eye please 😆)…so now this is about a few months of‘watchfully waiting’

[skylark15 in reply to EOLHPC]

I'm so glad it went well ( apart from the numbed eye!) and sending you all best wishes and hugs.

It does make one wonder, doesn't it, when it appears that an organisation's left & right hands don't communicate?

Txx

[EOLHPC in reply to skylark15]

👍😂🤷🏼‍♀️💞