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Old 06-27-2011, 12:18 PM #1
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Default Oh oh -- PN getting worse!

i was diagnosed w/ idiopathic pn about 10 years ago and it's been pretty stable all that time. no pain to speak of but very numb toes with subsequent loss of balance. 4 years ago, i took up stand-up paddle board surfing. it took me two of those years to even be able to balance on the board. now i can ride waves pretty well, and i was even starting to be able to walk the board toward the nose, with hanging ten not too far off.

but in the past month, my PN has worsened. for one thing, my right big toe is locked in place and i can't flex it even a minimal amount any more. but the bigger issue is my right foot is beginning to drop, and it's causing me major problems trying to walk my paddleboard. because of the PN, I was never graceful; it was always clomp clomp clomp, but now it's clomp ... splash. very upsetting. plus, i'm getting more pins and needles, which i never had before. and my lower leg muscles have atrophied to frightening degree. And, while my ankles have felt like rolling for years, i never actually rolled one until a month ago, in the surf, tiny waves, and now it feels like it's going to reroll all the time, so i've started to wear a brace both in the water and out.

so, i guess my question is basically, what now? i've never done anything specifically for my PN (my dr says there's nothing to be done) but i think it's time to try, despite what my dr says.

do ya'll follow any pn-specific exercise protocols that i might copy? i like riding a bike because i feel like i'm working out my toes; on the other hand, maybe i shouldn't be stressing them at all.

as to vitamins, i'm going to start with Vit D and B12 asap. in 2009, the last time i was tested, my b 12 was 543 and my vit D, 25-dh, was 19, which is odd given how much time i spend in the sun. in any event, i never did anything about the D and I gathered my b12 level was okay. think i should start up with vitamins for both?

i've got more to say but i'll end it here. thanks for any help you care to offer!

(p.s., i also have hypothyroidism, which i take synthroid & cytomel for ...)
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Old 06-29-2011, 12:44 AM #2
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What type of doctor said there was nothing to do? Meds or other treatments can often help one get to a better place with pain. Could you see a pain doctor or have you been to a neurologist?
I am not sure about the drop of the foot. I also am not sure about riding waves with a condition like this. I would not be able to pain wise but even if i could I would not in fear of hurting myself. I know everyone is different in terms of what they do. I would discuss the activity with your doctor. We are all different in terms of what we should do. Have you tried pool therapy since you like water?
Have you had your blood sugar tested? When I hear numb feet etc I think of that.
I am not familiar with your d levels but did your doctor state to take supplements? I do though not rx ones even with normal d levels. I have osteoporsis though.
Sorry I am not more help
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Old 06-29-2011, 02:28 AM #3
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Shocked

I don't know how anyone with severe PN could paddle board and/or ride a bike! I would be very cautious with both of those activities. An injury could result, and cause severe damage to the ankle joints or bones in the foot, which may not heal well.
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Old 06-29-2011, 05:58 AM #4
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Quote:
Originally Posted by mrsD View Post
I don't know how anyone with severe PN could paddle board and/or ride a bike! I would be very cautious with both of those activities. An injury could result, and cause severe damage to the ankle joints or bones in the foot, which may not heal well.
Thanks for the responses! Firstly, I don't think I was clear enough about one thing: all I have is numbness of the toes and feet. With the twice-a-year (so far) bout of searing pain on the ball of my left foot, I have not experienced *any* of the pain that seems to be part and parcel of most folks' PN. So, what my neurologist said, is that there's really nothing to be done for the numbness; he wasn't talking about pain.

Mrs. D: surfing is the *only* thing that keeps me sane in a rather insane world. Without it, I'd be a blubbering mess most of the time. So, I won't give it up unless I'm absolutely forced to. Plus, possibility of injury aside, isn't exercise good for one's joints? I know I'm losing muscle due to PN, but I like to think I'd be losing a lot more a lot more quickly w/out surfing and cycling.

From what you say, I'd gather that my PN is not nearly as severe as most people's here. But it is getting worse, I think. Which is why I asked about what things I should be doing to slow down the disease's progress as best I can.

Thanks again for any thoughts you might have.

Oh, here's a question. My neurologist has off and on talked about me getting a lumbar puncture to try to determine the cause of my PN. He's never pressed it very hard, just mentions it kind of casually. But ... is that something I should probably do? Is there any reason why I shouldn't do it? Thanks!

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Old 06-29-2011, 08:52 AM #5
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Lightbulb

Numbness is more dangerous than pain.

Numbness is the main cause of Charot's foot called Neuropathic arthropathy:
http://en.wikipedia.org/wiki/Neuropathic_arthropathy

When numbness is present, one cannot feel where pressure and injuries are occurring in the foot.

If you search Charcot's foot on Google, and click on images, you will see some horrific things that result from numbness.

I'll give a further example. I met a medical doctor at a conference once, and he was moving about with a little leg walker where one kneels on a pad and pushes along while walking on the good leg. The subject was B12 and he came up by me where I was sitting to ask the presenter a question during the break. She was busy so I asked him about his situation. He said he did a very stupid thing. And I had to agree when I heard his story! Here goes.... He bought a pair of new golf shoes and did not break them in properly. He developed a blister on the ball of his foot. Which hurt like the devil. He had a special meeting coming up for a golf game and get together and rather than miss it or not participate, he numbed his foot with a lidocaine shot. (I am thinking he was a podiatrist or DO), and did the golf date. What happened? His blister which was telling him to not walk on it until new skin formed ....became 100 times worse, the tissue beneath the skin ulcerated and he could NOT heal it up! He was at this conference to do his CE but also learn about B12. He had been on his kneeling walker for over 6mos, had been hospitalized with a severe infection requiring Zyvox antibiotic, which then lead to a neuropathy! His future was guarded still as the tissue that ulcerated out, while his foot was numb wouldn't grow back.
So the ulcers and horror pics on the Google search reflect that result too.

Pain, as terrible and wearing as it is, is really our friend, when it comes to neuropathy. It tells us to stop whatever is causing the pain. And there are times we need to listen to it.

The bike riding is less weight bearing and may be less dangerous than the boarding you are doing as long as the resistance is kept low and you don't put too much pressure on your feet. But I myself have learned that if you continue to do weight bearing or pressure causing activities when your feet are numb...you risk injury and that injury may not heal up in the end.

So do be careful.
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Old 06-29-2011, 10:09 AM #6
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good lord that's kind of scary. while my feet and toes are numb, however, they are not yet numb to the point where i can't feel a thing. for instance, i can't walk on pebbles -- painful in the extreme. also, i can still flex most of my toes and feel pressure on the toe tips, so that's good, i guess.

i don't think i'll be taking your advice to go look at the pix. it'll freak me out and depress me, and -- as long as not looking doesn't do me harm, i don't see what the point of looking would be, other than to freak me out and depress me. in any event, it's not going to change my behavior; your words alone are enuf to make me try to be more careful. (my girlfriend has parkinson's disease and we make a point to never, ever, ever read about the long-term prognosis for those w/ PD ...)

thanks again for your thoughts. and i think i'll start a new thread about the whys and wherefors of getting a lumbar puncture ....
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Old 06-29-2011, 10:35 AM #7
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Lightbulb

I don't enjoy bringing up this topic so dramatically. In fact I tend to not demonstrate "what can happen" to posters who come here.

Attitude and positive thinking are really important in PN, because it is a long term problem and causes alot of despondent and depressing feelings of frustration.

But I do think that all people with PN should "baby" themselves to some extent. Your doctor(s) won't do that for you, and we in our culture place alot of emphasis on activities and exercise.

Getting adequate rest, eating cleanly by avoidance of sugar and high glycemic carbs, and getting the proper nutrients by supplements if necessary is part of the daily routine we all have to follow. Avoiding injury is also in that package, and I will confess those illustrations of Charcot foot, are enough to upset anyone.

I no longer bowl or play racketball/tennis. I can't hike on our shore anymore, or even walk long distances in one attempt without resting. I use a walking pole for stairs just about 100% of the time now, and outside when gardening. My balance is going and I know it. I wear super comfortable shoes/slippers, and I examine my feet carefully very often. Any blister or injury on my legs/feet get cleaned well with peroxide and covered with antibiotic ointment. (our new cat has been a huge challenge in this regard...but now she is controlling her claws much better.) But just a month or so ago, my son came over and pointed to a blood drip going down my left leg near the ankle, and I missed that one and have no idea where it came from... and I am thinking a deer fly perhaps?

My goal? to NOT end up in a wheel chair in my forseeable future.

So I apologize for having to pointedly give you that link.
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Old 06-29-2011, 11:02 AM #8
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from personal experience i can validate what Mrs. D is saying. My legs and ankles are very numb and i have broken many toes and sprained and broken my ankles many times. I was tested for charcot foot since the orthopedist thought it was a possibilty because of all the breaks and sprains. I had bone scans done and this was not the case but it put a scare into me and i try to baby myself a little more than i used to.
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Old 06-29-2011, 12:11 PM #9
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once again, thanks, and warnings are very duly noted.

i will say this about balance. before i first tried stand-up paddle boarding, i told my neurologist i was going to do it and told me to go ahead but it wouldn't help my balance; and, in fact, he didn't think i'd even be able to stand on the board w/out falling off. he was right ... for about the first two years. all i did was fall and flub and curse like a maniac. but then, little by little, my body began to get it, or at least something began to get it, to the point where now i can stand on the board pretty darn well, even in a good bit of froth and chop. sudden unexpected movements still throw me in the drink but for the most part, i'm pretty darn stable, all things considered.

that said, i am beginning to feel a little shakier than usual, so something is going on that's not good, which is why i'm here.

p.s. the word 'charcot' rings a faint bell. i have a ***terrible*** memory, so i guess i'll have to call my neurologist and see if it's a word he used in connection with my condition ...
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Old 06-29-2011, 12:23 PM #10
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Lightbulb

Charcot was a very busy guy... his name is linked to many things.

The other PN link is Charcot Marie Tooth (CMT) neuropathy, which is progressive and inherited. It can be tested for with DNA
testing, but that is expensive.

more here:
http://neurotalk.psychcentral.com/thread121564.html
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