I have no trouble driving with AFO's either.

The neuropathy has not progressed and I have been treatment free for two years. Very hard to tell, possibly the combinations of treatments stopped it, or possibly it would not have progressed any more and would have stayed in lower legs or possibly it could still progress. Hopefully not the last one. It also has not improved. That is why I tried the stem cell therapy --hoping for some regeneration.

Hi northerngal

Your post is intriguing. Mind you, the more I find-out about P.N. the more complicated it seems.....

Firstly re Pregabalin/Lyrica: reading the leaflet, which I'd not really done before, it seems to be aimed @ people suffering from epilepsy, neuropathic pain & General Anxiety Disorder. The detailed information on neuropathic pain states '….is used to treat long-lasting pain caused by damage to the nerves.......pain sensations may be described as hot, burning, throbbing, shooting, stabbing, sharp, cramping, aching, tingling, numbness, pins and needles. Quite a list but, on reflection, it does seem to be including numbness as a 'form' of pain. It begs the question if anyone in this forum has had their numbness improved by Lyrica/Pregabalin - or anything else. I'll let you know if Lyrica has a positive result for me; I guess it will be sometime November before things become clearer as dosage is being increased slowly in case it impacts another condition

I'm intrigued by your comments about walking and driving. Unlike you, until the last 2 weeks I'd been seriously thinking about giving-up driving as it is so uncomfortable due the numbness in feet/lower legs but walking is fine as long as I walk fairly quickly. My problems tend to occur when my lower legs are in the vertical position e.g. when sitting without a foot stool or standing still. Oddly, I do 2 or 3 45-minute really tough 'spin' classes per week & have never had a problem. (The only pain/numbness I've ever experienced on – off! - a bike is going over the handlebars of a real bike @ 20 m.p.h. OK, strictly speaking it wasn't quite 20 m.p.h.; it was more like 0 m.p.h – I was adjusting the pedals whilst on the bike (my middle name ought to be Homer), propped-up against the window of the bike shop where I'd had my bike serviced. It begs the question how come you see professional cyclists having high-speed crashes & moments later they're back on their bikes. I fall ever-so-slowly sideways off a stationery bike & fracture my wrist :Doh:)

Like you, my unexplained P.N. may also be linked to a compromised immune system (I have 1 of the 'better!' forms of leukaemia & 2 other conditions) tho' the consultant I see thinks not. I've reached the stage where I'm not that interested in a diagnosis; I'd much prefer some relief of the symptoms

Good luck in your search for something to ease your symptons

DavidA

I have got SFN my neuro recommended on IVIG, they said it might stop the progression and even reverse the damage.
Why have you stopped the immune modulatory treatments ?
How do you know the attack on your nerves stopped ?

Good luck with the stem cell therapy !

Hi Susanne C

Good to hear a little success story with your AFOs - had to look-up what they are!

This may be completely useless, as your condition is fairly different from mine, but 2 weeks ago I was seriously thinking of giving-up driving (like you, I only drove locally as numbness comes-on quickly when driving). As per my post earlier in this thread I've found by driving a car with a 'more horizontal' driving position - hope that makes sense - the numbness is lessened & more tolerable & I'm now able to drive a good deal further. Starting to-day I'm looking for a car very similar to my friend's, lent to me whilst he's been on holiday. Additionally his car is an automatic which also helps

My very best wishes

DavidA

I think my immune system is the opposite---not compromised but possibly overactive. I have high igg and igm and have hardly been sick a day in my life. The ivig was to "modulate" the immune system. Yes, i would be interested if you find that the medication had an affect on numbness...thank you :)

I was on the IVIG at many different regimens for several years. My neurologist felt the only way to see if I still needed it was to stop and see what happened. I stopped 2 years ago and have not progressed. By that I mean, I have not got any weaker in the affected areas, it has not spread to any other non affected areas.
The IVIG itself does not heal nerves, it modulates your immune system so it does not attack the nerves in hopes that they will heal . In my case my nerves have not healed. Sometimes when there is axonal damage like I have, they aren't able to regenerate. that is why I tryed the stem cell therapy, in hopes that it would promote healing.

I would definitely only want to drive an automatic now that I have PN

This may sound 'bonkers' (ie crazy) but I've found that wearing very flat shoes - without a heel - also helps a little (for driving, not walking). And for good measure I remove my left shoe whilst driving as the left foot is not needed for driving an automatic if you drive on the right, as we do here. Every so often I 'wiggle' my toes, do 'pressing/stretching' actions with my foot. All of this seems to give me a small but still welcome easing of the numbness

I know what you're thinking. Taking off a shoe in a semi-public place. What about the driver's 'personal hygiene' & its impact on others in the car? No worries - I wash my feet every month, whether they need it or not :icon_biggrin: