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.

[Smudge_Crawford]

Hi skylark15, I'm so sorry that you have this vast array of diagnosed diseases, I thought I had it bad having M.S., Reynaud's Phenomenon, and Essentials Thrombocythemia, altogether but to add in what you've got as well, you have my sympathy, I'm sorry I don't have any suggestions about your question, but I do hope someone replies who can help, I just had to show sympathy and answer

[skylark15 in reply to Smudge_Crawford]

Hi, Smudge.

Thank you for your kind response and for your sympathy. I find it interesting just how many people on these forums are living with multiple, unusual (or rare) conditions.

You do have it bad, Smudge: that combination must be wretched and I feel for you.

Yesterday, I bit the bullet and declared the Peripheral Neuropathy to DVLA, which involved completing a form, CN1. I am just worried that if I should have an accident, whether or not it had anything to do with my PN, my car insurance wouldn't pay up, because I hadn't declared the PN😧.Because the form asks for details of both GP and consultant, I've written to both, to alert them that they might hear from DVLA. I'm keeping my fingers crossed that the declaration is nodded through or that I'm told to have a driving assessment.

I'll post again, once I hear...

Tess

[Barnclown]

🤩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

[skylark15 in reply to Barnclown]

Dear Coco,

Sooo goood to hear from you. Thanks for your kind response. I raised an eyebrow at the phrase: "... the usual secondaries"! Each of those alone would be debilitating in an ordinary universe, where those without multiple, unusual, rare (or in your case, extremely rare) live.

I think you're probably right in your interpretation of the DVLA & Disability requirements in your case. It's complicated and I've been agonising for literally years about whether or not to declare the PN but DVLA have recently updated their advice and it has a less absolute, stringent "NO"! than was the case the first few times I read the requirements over that time. Phew.

We went to see the new Spiderman movie the other day. We wait until our brilliant local cinema is about to stop showing a film and then book for a daytime slot, when there won't be many people in there. Sometimes, we're the only ones. The film was great: maybe all of us were bitten by a different venomous spider, one that gives us special powers to juggle all these complicated conditions, keeping track of hospital appointments, following daily routines and filing letters in their allotted place and still having time and brain space to be empathetic to others as well. What do you think? You are the Queen of this stuff 👸😘🫠.

💚💙❤️🧡💛Tess

[Barnclown in reply to skylark15]

🤗you’ve helped me greatly by thinking all this through & explaining your take on it so clearly & concisely…if ANYONE has special powers, it’s you…and for my part: synchronicity may be at work, cause have just recently come to the conclusion my diethylstilboesterol (DES) inutero exposure more or less set me up to have no choice but eventually fully EMBRACE big pharma critical, as I have…I mean my medics think DES tipped me over into all this Immune Dysfunction & now my powerful meds are making me more functional & my life much much more worth living…so maybe DES was actually my different venomous spider 😯. Have you any idea what yours is? 🤔😘🍀

[skylark15 in reply to Barnclown]

😚😚. I think it takes one to know one 😉. I'm so glad you are on a cocktail of the right (and powerful) meds, and that you are under the care of several consultant teams and associated associated professionals that all talk to one another.

You & others have discussed on here that one has to be one's own expert patient, to keep track of everything but I'm sure regular Multidisciplinary meetings of those professional teams must help to take some of the feeling of responsibility away. I wish my otherwise excellent hospital teams would talk.

Tess 🫠😘😘

[Barnclown in reply to skylark15]

Well, 🤷🏼‍♀️me too tess…mine only talk when red flags are waving…but they are all always aware of what each other are up to because I make them include in their reports how that affects their own bits of me …👍 they are all willing & cooperative, but there is simply no time for MDT meetings except in extremis, which I hope to avoid …& post-pandemic everyone is under even more time pressure…well, we all hope to avoid …what a life this is.🤦🏼‍♀️💞💞💞💞

[Bkart]

Hi Skylark15,

I am still being accessed for SSC but I also have a congenital heart defect plus a heart arrhythmia, unstable angina and a previous heart attack. Due mainly to my heart problems I do occasionally check the DVLA list of conditions that need to be reported. I hadn’t checked for a while and I was quite surprised how extensive and inclusive the list now is. I feel that unless my disability or illness is actually on the list then it is ok to continue to drive.

However I would caution that even if a particular disability is not mentioned on the list if you feel that your ability to drive safely is causing you concern then perhaps it is time to stop.

Unfortunately I reluctantly decided to stop driving 18 months ago as the skin tightening in my feet and lower legs (now in my hands) meant that I wasn’t confident that I would be able perform an emergency brake stop. Initially this was so hard trying to explain to family, friends etc., why I had given up driving, never mind the loss of independence! As with many things that are out of our control you have to learn to accept the situation, my husband has to take me to appointments and out and about. I do feel sorry for anyone who does not have this support, making the call to give up driving will be even harder for them.

I’m sorry this post doesn’t directly address your situation but hope that it may help you or anyone else, even if your condition doesn’t need to be reported to the DVLA, to make an informed decision. I like to think that if my condition improved then I would have the confidence and ability to drive safely again someday. Never say never!

Wishing you all the best.

[skylark15 in reply to Bkart]

Hi, Bkart.

Thank you for your thoughtful response. My word, you do have a lot to deal with. Sending you best wishes.

I'm glad that you have lots of support and I love your "never say never" approach.

Tess

[Bkart]

Thanks skylark15 for your kind words. It’s amazing how this forum works for us, I answered your post because whilst our situations are different I really felt for your predicament. I then went on to read another post from Old Ted who has finally, thankfully, managed to get a full diagnosis for Scleroderma after many years of trial and tribulation. Then reading her post has given me the drive, excuse the pun, 🤭🥲 to contact Professor Denton myself. Our posts really do help others as well as ourselves in many ways. Sending best wishes to you. 🌻🌞

[skylark15 in reply to Bkart]

😊😊xx

[Barnclown]

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 conditions 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 even more hoops….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