Hello! Hi! Bonjour! Hallo! Ciao! Olá! ....
 

Guten Tag! Aloha! Hola! Hej! ..........:Wave-Hello:

to everyone (& if I've not included 'your' greeting, apologies, I've never been good @ languages)

I only found NeuroTalk recently & am looking forward to wandering around its highways & byways. I guess like others before me I hope to discover a few 'tricks' & ideas to make life a bit easier – ever the optimist!

Firstly, I'd like to say a big Thank You to DocJohn for getting things started & to the many others (e.g. in the Community Support Team & members) who must be working hard to ensure that NeuroTalk functions well.

A little about me. I'm in England (approx. 3,500 miles north-east of New York) & - shock, horror – not a villain, despite Hollywood casting all 'Brits' as villains.

As far as I know, I've never met or seen anyone with my particular N.P. problems: numbness (no pain) in feet & lower legs. Hopefully, will get to know & learn from others in a similar situation or with background knowledge

Have tried Gabapentin – didn't work for me - & currently building-up dosage of Pregabalin (no help so far). The only thing that helps is raising my legs to a horizontal level & having a couple of glasses of nice wine (purely for medicinal purposes :) )

Wishing everyone success in their personal battles against N.P. & other illnesses

DavidA

P.S. 'Super Mod' Lara suggested I also post my introduction in the PN Forum. Hope I got it right!

Sean Bean may play a mean villian, but hence forth he is always honourable Eddard Starkto me. I even went yourhonorable to proper welcome.

Look at that!

Doesn't the wine affect you negatively the next day?

My best,

Jon

Jon, Thank you for your welcome
Even tho' I'm a big drinker I never have any morning-after-the-night-before regrets :)
Best regards
David

P.S. When I say 'big drinker' I mean I'm 6'4" (1.93m) & can just about manage half-a-bottle of wine before falling asleep :Zzzz:
P.P.S. I really must get-round to watching Game of Thrones; heard so many good reports of it. Having read some of the books quite a while ago I was uncertain how well they would be presented

Welcome! I like your sense of humor! I've always thought the "Brits" have some of the best comedy shows on TV. As to your question, I don't have that particular symptom but I am sure there are some on this board that do and I know I have seen it under symptoms of PN. You are lucky you can drink wine. For many of us it triggers our symptoms.

Thanks Pinkynose (there's obviously a story behind such a name:Hum:)

re: the sense of humour, life's too short to take too seriously :)

I had no idea that alcohol could trigger symptoms. Perhaps I'd misunderstood the response from KnowNothingJon earlier. If so I'd better change my name to DavidKnowsEvenLessThanNothing!

David

Thanks for the chuckle david, aka DavidKnowsEvenLessThanNothing!:D
I look forward to reading future posts! I actually stole the name Pinkynose from my female cat and yes there is a story.....

Hello.. and welcome.
I was curious as to why you are taking gabapentin if you do not have any pain. My symptoms are numbness and weakness in the lower legs, no pain .

David,

Just wanted to say Hi, I'm a little NE of you.

You can learn a lot here from our fellow Members, I have in my time here. Be sure to make full use of the Forums and the Stickies.

Dave.

Hi northerngal,

Really good to hear from you; I think you're the 1st person I've 'met' with similarish symptoms to mine. I do hope you've found a few things to help you.

Re the Gabapentin: the cause of my P.N. is unknown after all manner of tests. I do not have pain but the neurologist thought it was worth trying, tho' it sounded like a bit of a 'long shot' (ie unlikely to ease symtoms of numbness in feet & lower legs) & it proved to be of no help. I'm currently taking Pregabalin which I think, is the 'last throw of the dice'. So far it has not eased the symptoms but the dosage is being slowly increased every 2 weeks; time will tell if it can offer any help - one lives in hope!

Over the next few weeks I'm going to check-out the site to see if anyone has had any success with supplements or TENS machines or..............anything. I know very little about P.N. - my 'coping strategy' was to try & put it to the back of my mind & get on with life. As a coping strategy it was on a par with some of Homer Simpson's really dumb ideas. :Doh:

The 1 little success I've had so far is with driving. Nowadays I drive very little but a friend has loaned me his car – a BMW 5-series – whilst he's on holiday. In his car I'm almost in a 'lying down' position - unlike my own, a Renault Scenic, where I'm very upright - & whilst it doesn't totally solve the problem of numbness whilst driving it does seem to make things easier. I wonder if you've had similar problems & found your own solution?

My very best wishes to you & everyone faced with horrible life-affecting conditions

DavidA

Hiya Dave
you're obviously a fan of EL&P; I've seen a good many bands in my time (& for several recent birthday parties have got bands to liven things up – I love live music) but never did see them or The Nice (I have a couple of friends who did see them; I'm told not only were they consummate live musicians but Keith E's on-stage 'antics' meant you never knew what might happen next)

I certainly do need to spend some time looking around the forums (when I was young I did Latin for a couple of years; would have been in trouble for using 'forums' rather than 'fora'). I guess now the Roman invasion is over we don't have to speak Latin anymore!

Must learn how to use Search function better as not been too successful using it so far :Scratch-Head:

A quick read of your profile shows life has been beyond tough at times. Wishing you some good luck for the future. And apologies, I missed who is your raison d’être ?

DavidA
P.S. Your use of song lyrics got me thinking about appropriate songs for N.P. Two come to mind: The Stones' 19th Nervous Breakdown & Pink Floyd's (Un)Comfortably Numb. Am sure there must be more; perhaps someone will suggest others (if this is not bad use of the forum!!)

Hi DavidA (aka DKELTN)

Welcome to Neurotalk. Thanks for injecting a little levity into the discussion. We can always do with a good laugh now and then.

Just to add to the numbness count - it was one of my first constant signs of PN - still is. Started on side of head, left hand, left foot then progressed to right foot, and right lower leg. Sorry no solutions for you - I do the Homer Simpson thing and ignore it. (I've also pretty much given up on the wine - low tolerance these days).

Has your doc given you any idea of the cause? - knowing that can help to figure out which treatments to try.

Have you figured out the 'stickies' yet - they can be useful and shortcut the searches?

I hope you find some answers here - keep us posted.

Cheers
bluesfan

I think laughter is a powerful drug. I'm not sure if this is forum appropriate either, but I could not resist due to the subject matter so how about an additional appropriate song: Huey Lewis' I Want a New Drug? :highfive:

Hey David,

My raison d'etre is my Granddaughter, I found out she was coming at the same time I found out I had Cancer, it softened the blow and gave me hope.

We have a Forum for discussing everything Social - music, tv, literature or anything on your mind:

http://neurotalk.psychcentral.com/forum35.html

That way these Threads are kept relatively on-topic, not that things are really strict with additions. It is also more of an experience if you explore the other Fora (!) and immerse yourself totally. It is surprising what is relevant and what you can learn across the Boards.

Dave.

Thank you bluesfan

haven't quite worked-out where you are or where your 'nom de plume' comes from; may be my ignorance in navigating this site. Are you a fan of a team that plays in blue or a fan of blues music or.......?

Re the cause of the PN - after lots of tests it's a complete unknown but from the little I've picked-up from this forum that's not unusual

Life is fairly busy @ present but I must set-aside some time soon to do as you suggest & look-at the stickies

Sorry to hear you are 'off' wine - I find it 1 of the 'little pleasures' in life but now understand it can cause problems - & my best wishes in your search to find help

DavidA

I still drive my regular car, a mazda crossover, vehicle. I have not had any issues with driving. Although my feet are numb and weak , my planter flexion is ok (not as strong as it used to be, but ok) my dorsi flexion is very weak. Driving is easier than walking, due to foot drop from the weakness.
I have never taken any medication for symptoms, as I have no pain , only numbness. I am not aware of any medications for numbness--that is why I questioned yours---I was hoping it was something for the numbness.
My neuropathy is thought to possibly be immune related, but this is not a definite diagnosis....more like a "best guess" from doctors because I don't really fit any reason exactly. I have taken prednisone, ivig, plasmapherisis, and rituxin for immune modulation.

If the foot drop is interfering with walking, have you considered AFOs? ( ankle foot orthotics) I just got mine about a month ago, allard toe-offs, and the difference is amazing, I walk much faster, I don't really need a cane anymore, and I am much more "rooted" to the ground, much more stable. No more gravel sliding noises as I shuffle along either. They are cumbersome but I got used to them quickly. Anyone with muscle deterioration from PN should consider them although they are primarily used for hereditary neuropathy as that causes progressive muscle atrophy.
Driving is definitely getting harder, my legs are completely numb to the knees. I have to switch out of my braces to drive and only drive locally. My strength gives out within 15 minutes.
I guess my theme song is "comfortably numb" since my medication works pretty well for the sharp pains in my feet and legs.

yes....I wear afo's. They make a world of difference :) I should have clarified above, I was referring to walking without them. I drive with the afo's on, it's just much quicker and easier than putting them off and on. I have worn them for a few years, you might find them easy to drive in once you are more used to them.

Hi DavidA

The moniker comes from enjoying blues music during past years working in the States - rarely get to see live performances now days - marooned in rural NZ and get my blues fix either from CD's or online.

Keeping busy's a useful distraction if you can manage it - unfortunately my "to do" lists exceed my capabilities for physical/intellectual competence - ie: cross 1 thing off - add 5 more. C'est la vie!

Hanging on to life's little pleasures is important when the cards are against you - I've substituted the occasional decadent hot chocolate for wine - just as sinful without the bad effects.

My neuropathy is also probably immune without a definite diagnosis and my symptoms are mostly numbness. I feel the reduced sensation is getting worse and spreading and for the past couple of months it became difficult for me to handle small objects, I am dropping bottles caps, keys, pills etc.

Has any of the immune modulatory treatments helped your numbness or stopped the deterioration ?

Hi David, I am also new here. I have got SFN with numbness and not pain (just burning, tingling..) and some autonomic symptoms.
I haven't found yet a treatment for the numbness. It seems that a healthy nutritioun and antioxidents helped me with many others symptoms, I don't know whether it affected the numbness.

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: