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ConsiderThis
09-13-2006, 03:21 PM
I have some peripheral neuropathy, which actually is way better since I had a huge amount of vitamin B12 after I completed a round of Metronidazol for the tetanus I had.

But, the thing is when there is stress, and there's so much of it, I have a lot of trouble with the feeling in my feet.

If you have peripheral neuropathy, do you ever get that feeling that your foot is slipping out from under you, when actually it's on the ground and not moving at all?

That feeling causes me to lose my balance when I try to catch my balance... it's hard to explain.

In the house, where I can quickly lean toward the hallway wall or catch hold of a cabinet or table I'm not so bothered. But when it happens outside I break out into a cold sweat (I get sort of shivering cold and I also am sweating). It's so scary. (because my feet don't feel secure, and I keep feeling as if I'm falling, you know that feeling when you first lose your balance when you are falling.)

But it doesn't happen all the time.

So I don't carry a walking stick all the time, because I often am carrying plants or garden things.

How do you deal with this... or don't you ever experience these feelings in your feet?




nide44
09-14-2006, 08:36 AM
Loss of balance is common with symptoms of PN.
I don't think its an inner ear thing, but the mixed messages and sensations dealing with the feet. That's why the neuros want to watch you walk, unteadiness of gait is a big factor.
With some, its more severe than others (just like everything else "PN" related)
I frequently have missteps and unsteadiness.
Just have to stop in my tracks and hesitate for a moment.
I've grown accostomed to the fact that it happens,
but will never grow accustomed to the feeling.

ConsiderThis
09-14-2006, 08:42 AM
Hi Nide :)

I think, but I may be wrong in that thinking, that it is you to whom I owe the fact I now take Antarctic Krill Oil for the fatty acids.

Okay... yes, the neurologist always checked my "gait."

When I went in to the see the doctor well into the privy pit excavation, I had trouble just standing on the scale, I had so much trouble with balance.

But, do you have the slipping feeling? Or do you have the numbness thing where it doesn't feel as if your foot has hit solid ground... or what?

nide44
09-14-2006, 08:48 AM
Its mixed feelings, & different feelings at different times.
PN keeps you 'on your toes' (pun intended) all the time.
I've had slipping, numbness, ankle buckling,
missing steps cause the feet don't go where I thought they did, etc.
Sure is fun, ain't it?

ConsiderThis
09-14-2006, 09:04 AM
Its mixed feelings, & different feelings at different times.
PN keeps you 'on your toes' (pun intended) all the time.
I've had slipping, numbness, ankle buckling,
missing steps cause the feet don't go where I thought they did, etc.
Sure is fun, ain't it?
I don't really know much about it. I didn't know that it could cause the feet not to go where you thought...

I'm also not sure what ankle buckling is.

During this last summer when there was quite a lot of stress I had some pretty intense, sharp, sudden pain in or around my hip, and that made walking difficult because it seemed to make my leg/legs buckle - it made them just sort of give out. So when that kept happening I hurt my ankle and my wrist, but I didn't fall and hit my head again.

Do you notice if it gets a lot better when you rest?

Do you notice if it gets worse when you are exposed to toxins? (I had several years of pretty intense poverty and couldn't get some leaks fixed... It is really hard to actually get things done properly. I'd pay and people would come in... but the problems would remain to enough of an extent that recently I had quite a lot of sodden wall board removed... black with mold. I had that done because I was beginning to lose hair again, which I now associate with exposure to toxins.

I could tell that my leak wasn't just in the shower, or the water wasn't contained by the shower, because the Saltillo tile in my kitchen, which shares a wall with the shower, was getting damp looking, and my air purifiers were needing cleaning in days rather than weeks.

I guess I wonder how much all of us are exposed to, that we sort of ignore, because we are so overwhelmed by just dealing with the most obvious problems... like walking and staying positive...

darlindeb25
10-10-2006, 05:01 AM
I have a different problem. I find that I dont pick my feet up. Some days I have to consciously make myself pick them up. I know there are days my feet really drag and then there are days where I don't realize they are dragging until I trip. This summer I fell up my apartment steps, which are cement (remind me, what was I thinking when I found a basement apartment?)--I tripped on the 3rd step from the top and fell up the other 2. There is tile in my kitchen and indoor/outdoor carpet in my living room. I have managed to trip over the tiny height difference in the tile from the carpet and it's a tiny difference. Some days, it seems like my feet are very heavy. I wear sneakers for work and some days, I trip simply from the tread on the bottom of the shoe and not raising my feet. Yet, no treads are bad too. Constant battle, isn't it? I think the worst are the days that my feet are in such pain I can hardly stand on them and mysteriously, the pain just goes away, like it was never there. Neuropathy is such a weird condition.

Deb

dahlek
10-10-2006, 07:28 AM
I've had serious balance problems and what is called 'prioperception' [essentially, how your nerves aren't sending the correct signals as to where you are and are going].

Ask your doc, also ask for recommendations of physical therapists [they get feedback and usually list accordingly]. My neuro and other docs have NEVER said I can't have it. My insurance covers a lot of it but it's limited to a number of sessions per year.

Web up ankle sprains, one good site is www.thestretchinghandbook.com but there are others with better graphics. The key is to learn how to do these exercises SAFELY at first. After that you'll find that there are ever so many steps you can take/do that will help you keep yourself upright the way you want to. You re-build strength and re-learn safe walking at the same time.

My last round of PT was for one sprained ankle & a broken foot [both feet] and I'd been off them for 6 weeks. After that round of therapy I was better overall than I'd been since before PN onset! Before I'd started the therapy, I felt I could have used two canes to get around in one piece....I now have 4 pieces of equipment [under $100.,] for home use: theraband {$10}, stretching bands{$15}, balance discs{$30} and an exercise ball{$30} . Most of the workout [not hard really] is resistance and lo-impact, and much safer overall than other options. Just start slow!

Hope this helps - j

HeyJoe
10-10-2006, 09:50 AM
I also have bad balance caused by numbness in my feet. If I close my eyes I start swaying or if I walk in the dark my balance is bad, add in stairs and Im likely to fall. My feet are so numb that I was walking the dog last week and noticed that my left shoe was off, I had to walk back three blocks to find the shoe, I never felt that it was off. I dont get that foot slipping thing though. I have sprained both ankles a number of times.

dahlek
10-10-2006, 12:26 PM
Good thing it was in the house! The OH, MY! Now what do I do? stuff hits you in the head, face AND feet hard! YES when any of the many docs I see ask me to stand w/eyes closed...well I just warn them...to BE THERE! Like you I can REALLY wobble good! Foot slipping I liken to the stair/step thing, only my issue is aggravated by cataract surgery scar tissue...one part of one lower eye is like a fun-house mirror...in that where I think I am putting foot/feetis NOT where it goes. Every time I stand up, especially in places not familiar...I kind of do a 'foot stomp'...I call it my getting 'feet reaquainted' to earth contact. Your feet don't tell your brain where they ARE.

From all I've read, it's all part of how the nerves relay info to the brain, damaged nerves, damaged info. Add to the mix, that when we HURT, we tend to move less...thus lose tone, reflexes and balance in the end. Some nerve balance stuff can be 'reprogrammed' thru the safe learing of exercises and thus strength thru the PT. Nerves can reprogram, regenerate and compensate...but it is a teaching process.. Doing/learning is a slow process as you have to condition/recondition: muscles, nerves and vascular systems. That is a lot to do in a body w/lots of issues already...

Learn Slow, SAFE exercises, using equipment and procedures to be done safely at HOME and well, the NEXT issue is MOTIVATION and discipline...Anyone got ideas here? Besides a buggy whip, I mean?

Look up 'ankle sprain' sites, then look at 'wrist sprain' sites, and then look at pilates stuff ...gotta be able to 'hold' yourself up for the next phases...

Good thoughts! - j

dahlek
10-10-2006, 12:29 PM
balance discs are a workout! Even after using them for a bit... Talk about a workout for folks who didn't used to be wimps!...First Time, I was soo glad a holiday weekend occurred between therapy session! - j

Wing42
10-10-2006, 09:47 PM
I agree with Nide44 on this. I went from having a mountain goat's balance before getting PN, even with a 50 pound backpack on, to what a neurologist called "unsteady on his feet". I tripped several times a day, and lost all confidence while walking.

Ayengar type yoga helped my balance tremendously. I'm no longer the mountain goat I was before getting PN, but have good balance and confidence now.

The basic principle is to work on your balance every day, and it will improve as your brain and muscles learn to make sense out of the changed sensations from your legs and feet. You can make up your own exercise program with a 10 or 12 foot long 2 x 4 beam on the floor. Start out walking both directions near a wall for support and confidence, looking at your feet and the beam as needed. Progress to walking away from the wall, progressing to looking at a spot on the far wall. Walk slowly. Walk quickly. Walk heal to toe. Walk backwards on the beam. Walk on curbs as you gain confidence. Your balance will improve, even if your PN gets worse.

Daily exercise helps. It sounds like you garden. While excellent exercise, gardening doesn't work on your equilibrium per se, or your "cross patterning" (see http://www.google.com/search?q=%22cross+patterning%22&start=0&ie=utf-8&oe=utf-8&client=firefox-a&rls=org.mozilla:en-US:official ). I found that walking daily, as much as one can without injury or increasing soreness, pretty much ignoring the PN pain, was and continues to be extremely theraputic. We have an aging large older dog that needs the exercise for physical and mental health, so she is our motivation for a 45 minute brisk walk every day. I still have PN pain and numbness, but it is tolerable and hasn't gotten worse in years. You and everybody else on this board should be so lucky (that's a prayer for people with progressive, crippling PN).

You might find some good ideas for coping and therapy in the "Sticky" section at the top of the main PN forum thread listing page. I've got a three part posting there starting with #18 at http://forums.braintalk2.org/showthread.php?t=177&page=2 . Good luck.

darlindeb25
10-11-2006, 05:37 AM
Weird--all I need do is look up and I get dizzy, usually only if someone is standing close to me. Kev knows that when we are standing close, he has to keep an arm around me because when I look up to him, I tip over backwards--thank God he is always prepared to catch me--funny thing is, he is only a couple of inches taller than me. If I close my eyes, I sway too, but I can still do that "stand on one leg" thing for a very short time, as long as I really concentrate.

Weird how we all have similiar symptoms and yet so varied. One thing we all know is that we never doubt another when they tell what they are feeling, we all know neuropathy treats us all a little differently, yet the same.

Deb

dahlek
10-11-2006, 09:48 AM
For my first few weeks of therapy [about 3-4...] I COULD NOT DO IT!...practice, and other supportive, strenghtening exercises.... well, by week 5 Heck! I could/was doing it! It was a sort of creep up on you CAN-DO!!! It was kind of a smack on the head big YESSS!
While your current nerves are mis-directing, good therapy aspects Can and DO retrain other nerves to do the job. It can be a slow and must be a gradual and progressive process. IF you over achieve, doing too much too soon you can do MORE damage, a thing none of us wants, ever.
Get smart, go smart, go slow, go progressively slow & smart and Get there!
I was told over a year ago by a 'second opinion' guru that IF I HAD X diagnosis, I HAD to be in a wheelchair.. my response was, I got the treatment I need, and I am too durn stubborn to give up in that way... I can drive, walk [not far tho]and can tryto be my own independent person...I DO NOT see any fat ladies [no offense here to those who've gained weight inadvertently...] singing my demise of late...
Oh, BTW I absolutely FAIL any 'eyes' closed test w/certainty! DUH! How FAR can one 'list'? LOTS

Good thoughts, heart and strength to go on -we all get there-whereever 'there' is! - j

Wing42
10-11-2006, 12:45 PM
... IF you over achieve, doing too much too soon you can do MORE damage, a thing none of us wants, ever...

I was told over a year ago by a 'second opinion' guru that IF I HAD X diagnosis, I HAD to be in a wheelchair.. my response was, I got the treatment I need, and I am too durn stubborn to give up in that way... I can drive, walk [not far tho]and can tryto be my own independent person...I DO NOT see any fat ladies ... singing my demise of late...

Good thoughts, heart and strength to go on -we all get there-whereever 'there' is! - j

On the first part, a neurologist told me I couldn't damage my nerves with exercise, no matter how much nerve pain it caused. That inspired me to walk again, eventually several brisk miles a day, ignoring the pain. If I hurt more the next day, I eased off. Having PN doesn't protect us from overuse injury, muscle pulls, etc.

The second part is inspiring and is an important lesson to all of us. NEVER ACCEPT A NEGATIVE PROGNOSIS FROM ANYBODY, ESPECIALLY FROM A HEALTH CARE PROFESSIONAL! Even if they mean well and only want us to be realistic, their ignorance is greater than their considerable knowledge, they don't know us profoundly in all our individual complexity, and their negative statements can be self fulfilling. If people believe their negativity, they give up, get depressed, and slide into painful decreptitude until death. The lesson is, never give up hope, never give up trying different things to get healthy, and never stop learning.

I try to avoid negative people. If a doctor tells you it's hopeless, find a more upbeat and supportive doctor. I was also told by a neurologist that my PN would get worse and worse until I couldn't walk anymore. Ha! Last week my wife and I walked for miles in San Francisco, including up and down hills and across the Golden Gate bridge and back. The PN hurt, but not to the point of agony or destroying my joy walking in that gorgeous city. This is 11 years after that bozo neuro told me the PN would be progressive.

Thanks for your great posting.

Silverlady
10-11-2006, 04:42 PM
BRAVO!! David. I'll go down fighting too. I'm still making the trek to the pool every week in spite of everything. I am so glad for the joy in your post.

Love,
Billye

darlindeb25
10-11-2006, 07:26 PM
That's wonderful David--you are an inspiration!

Deb

nide44
10-12-2006, 11:26 AM
NEVER ACCEPT A NEGATIVE PROGNOSIS FROM ANYBODY, ESPECIALLY FROM A HEALTH CARE PROFESSIONAL!

You got that one right !
Six weeks ago (Sept 3rd, 9-3-06) one of my sons broke his neck and was diagnosed as a 'paraplegic''. "He would never be able to move, and probably would never be able to breathe on his own again". That's what the docs (surgeon) said on Sept 5th after the surgery to replace his cervical disc (C-5) and remove the burst fragments compressing his spine. :mad:

I refused to believe it, and refused to have him told all that crap.
He's now out of Shock Trauma, in a rehab hospital, can move his arms, breathes without the vent or oxy assist, and will have his 'trache' removed in a week or two. He can swallow and is on solid (kinda :rolleyes: ) food. He almost has his electric wheelchair 'driver's license' (he negotiated 10 cones :) ) - and moved his knees ever so slightly together, yesterday- in a therapy session.

He asks if he'll ever be able to use his hands or if he'll
be able to walk out of there.
We keep telling him that :
"That's what they'll keep working with you on - in OT & PT.
We'll see what you can regain as the swelling in your spinal column subsides."
Each day, a new skill or movement is detected and is a cause for hope.
Hope for him and for all of us who love him so dearly.
His doc is a 'straight shooter' who pulls no punches and tells it 'like it is'-
but he doesn't really give us a cause for hope. He's on the worst case scenario track- serious & honest. :(
We have to look past that, he doesn't want us to be dissapointed or give false hope - but I believe that my son will do better & IS doing better than what was first told to us.

dahlek
10-12-2006, 12:49 PM
but did I touch/hit a tender spot here?

First off: get right on this...The chief neuro-cheese who'd said I should be in a 'chair' with the existing diagnosis was defensive from the getgo, as I'd been referred to him by an 'acolyte' who seemed to be positively panting to do a 'full seural biopsy' on me...It was conveyed in his letter to this guy his mentor. Also, the CIDP/Autoim. PN diagnosis was established by another chief cheese at an area to hospital [the rankings of 1-3 alternate year by year]. Add to that, the referring neuro [acolyte], used to be in the practice of my current treating and prescribing neuro...[a trifle ill will here? DUH]. SOO, from the get go with this one 'cheese', a doc, one I really respect for his neuro/pn researches, I just dished out the stuff, had to go with his acolyte...SOO, chapter 'n verse backing up MY opinons of the validity of a seural and opined that well...I think this one guy want's to play- as in ON ME?...I met the 9 of 10 rule from all ins cos I can find...and the Seural is truly a last resort and doesn't change anything treatment-wise! Well, This guy was sort of taken aback...I was probably citing studies he'd not read yet? End result, agreed w/me! The letter he sent to the 'acolyte' simply stated "Patient is VERY[B]well informed'. THANKS TO YOU ALL!
Soo the old axiom 'never give up' is a RULE. Never accept, always question, always learn and KNOW..or try to. Isn't that all what we do here there and where-ever? That and help each other when we can!

Don't know about you all, but there ARE times I wish I knew about those 'Ninja' dart thingies and could start 'dispensing' them on occasion?

Bob, A PM is in order -

Super fuzzies and hugs a la 'e' world to you all! - j

nancy-h
10-13-2006, 03:42 PM
Thanks, all, for sharing some of your symptoms. I have a lot of them and find my balance getting worse. Had my first fall last week but luckily only skinned my knee.

Often, and usually in the evening, my bare feet feel like they are stepping in something wet. Of course the carpet or tile is completely dry. That is a very odd feeling.

Deb - I also have to concentrate on picking up my feet when I walk and since my right foot is more painful that the left, I have a slight limp to protect it.

Well, have a good week-end all!
nancy-h

Wing42
10-13-2006, 08:30 PM
Thanks, all, for sharing some of your symptoms. I have a lot of them and find my balance getting worse. Had my first fall last week but luckily only skinned my knee.

Often, and usually in the evening, my bare feet feel like they are stepping in something wet. Of course the carpet or tile is completely dry. That is a very odd feeling.

Deb - I also have to concentrate on picking up my feet when I walk and since my right foot is more painful that the left, I have a slight limp to protect it.

Well, have a good week-end all!
nancy-h

Nancy,

There is no need to have balance problems with PN, but you need therapy and practice. I fell and stumbled too about 11 years ago. Work on your balance and it will get better. I did it with Iyengar yoga and constantly practicing which I still do, but any balancing practice will retrain your brain and muscles to move appropriately with your new PN nerve impulses.

See the balance beam suggestion above in the thread and/or try yoga with a good instructor who knows your health challenges. Or get thee to a physical therapist or occupational therapist. Talk with your primary care physician or neurologist to get a referral, and be insistant if you must. Your medical insurance should pay for physical or occupational therapy.

Tripping and stumbling can stop you from getting the healing exercise you need, can cause serious injury, and doesn't help your emotions or self confidence. Please don't just accept that your balance will never be OK. You can turn this around.

kvioland
01-18-2008, 03:23 PM
help, I have had two MRI's due to my right foot slipping, but not actually moving. My doctor thought it was a pinched nerve, tests came back negative. My nerologist wants to see me in three weeks-what to do in the meantime besides walking with a cane. this feeling/movement starting in the middle of November. K.

want2bwell
01-18-2008, 03:54 PM
I have neuropathy - I am only 38 years old. I stepped out of the house onto a concrete one step to my garage, twisted my ankle and took a nasty fall. This was Tuesday night. I am still very store. My 5 year old son was so scared - he was saying "Mom, you ok?". I said "I don't know honey, I just need to lay here and figure that out for a few minutes". I got up and felt ok. I hurt my ankle and foot - it swelled only a tiny bit - the back of my leg - the other knee and my arm. I was VERY LUCKY because the door on the Jeep was open that I didn't hit my head on that corner which is very sharp. I DO consider myself lucky this time. I am going to post a regular post on my update too, I havent' posted in a while.

hoibie@comcast.net
01-20-2008, 02:50 PM
For those having balance problems, I suggest taking at least the initial Tai Chi class . They are usually given in centers in most cities. I took the initial class and it did help my balance considerably. The class I took did not involve any physical exertion, only balance and slow movement.

shiney sue
01-20-2008, 06:41 PM
A few years ago I took a tai chi class and fell and fell...I kept it up until it
was suggested i stop...We do what''t best,and it was best I stop falling
into everyone...Hey Joe 3 weeks ago I was in a fancy restaurant,got
up to walk just a short distance holding on to the table...A friend came
up and whispered in my ear where's your other shoe,what,I walked
right out of it and didn't know it. it was kinda funny..We are all different
a real bad drop foot can really through you off balance.. Sue

HeyJoe
01-20-2008, 11:03 PM
you have a good memory...ha....yeah im still doing that... a few days ago i was letting the dogs out in the rain and i was standing in a deep puddle with no shoe on that foot..ha....actually someone was just talking to me about tai chi, i said ill do a class if you agree to catch me when im falling...

darlindeb25
01-21-2008, 07:24 AM
I was just revisiting this thread and reading my own posts too and realized, I haven't tripped like that in some time now. I do find myself taking a corner at work too sharp and after the fact, reminding myself that I am being an idiot! When I go from my desk to the insurance desk, I have to walk to the left, around a corner, and then to the left again around another corner, and I realize sometimes that I do it too quickly and I feel myself going off balance and the shocks I receive off the wall is proof of it! I hate those metal strips on corners!:eek:

Last week, a patient walked out of her shoe, turned and came back to get it, she looked at me with this sad look. I said, "It happens to me too!", she smiled and walked away. Well, now that I have said it isn't happening to me, it probably will! For now, my feet are having other ailments, it seems to go in stages with mine!

Everyone keep warm--tis cold here on the island--15 this morning!

Silverlady
01-21-2008, 03:22 PM
I think I've posted before about being fitted for inserts to brace my feet. I received them today and they were checked and cut down to fit my shoes. They increase the feeling of not making contact with the floor. They are molded to my foot then a heel is attached that is flat. The primary reason is to stabalize my heel and ankle which is deteriorating due to the osteoporosis, rheumatoid arthritis and neuropathy. I only have one brand of shoes that fit the things. They have a schedule of wearing them in order to get all the muscles in the hip, back and leg area accustomed to them.

The doctor said this is critical to the health of my feet. Has anyone else had this done? And did it help the pain in your hip, back and leg areas?

Billye

cyclelops
01-21-2008, 05:16 PM
I just read about a guy who looks to be older than me, with hereditary neuropathy, and he just finished a marathon with 'action adapted' orthoses, that don't look all that much different than prosthesis for amputees...work on similar principles but lighter, and slightly cheaper. (Think a second mortgage).

I am going to have a talk with doc, before I get another tibial fracture...and I just might try to find out how this guy trains....

cyclelops
01-21-2008, 07:08 PM
Billye

I have molded orthotics. I am on my second pair. the first pair was not very good but I had to make due for 2 years. They are custom molded plastic. I assume yours also have a heel cup or are more L shaped?

Regardless of the orthotic, they take a LONG time to get used to, and every time they change them, it is the same old thing, same weird sensations, same pain. I have had custom molded orthotics since 2002. I like the ones I have now, as far as being used to them, but they are not off loading my tib/fib area anteriorly and I can feel the stress. I feels very much like a stress fracture....which means I suppose I need to deal with it. I am just to tired to complain about another thing.

I have less and less sensation of contact with the floor anyway, but, orthotics may often increase the pain you have, for a while. You will feel really funny and even unstable for a while. I suggest using a walker or cane if it really bothers you. Watch your toes for clearing of thresholds or changes in levels.

If properly done, it should help your entire body alignment considerably. The key is 'properly done'. My first pair back in 2002 was not properly done.

Most insurance co. will pay for custom orthotics every two years.

The braces I pm'd you about are different....and very costly. I was shocked at the cost. Those I am sure they do not replace every two years, I assume those come with pieces that can be altered as the body changes. I am very relieved to see they make those kinds of things. I figured they should, but, didnt know they were out there and did not need all that custom casting.

I always wondered if they could make such good artificial prosthetics, why not do it for the gait impaired neuropathic....Any one with a history of unexplained fractures of weight bearing bones and a diagnosis of neuropathy, as well as inability to feel the limb, should look into those orthotics. Seeing the picture of that man crossing a finish line was inspirational.

They did cast your feet for the orthotic? It sounds like your orthotics are custom, so they must have fitted you.

I have noticed a lot of PTs lately seem a bit, disinvested or something lately...kind of like they know they can't do much of a job with the visits they are allotted by insurers...

I was fortunate that my last OT and PT were pretty good....but, it has been three and a half years on these orthotics and though they keep me from hyperpronating seriously, I can feel they are not working any more. I am going to ask about the ones I PM'd you about, and I am prepared to shell out some money....I do not expect insurance will cover the entire cost, and even the copay would be very, very steep I am sure.

I also have activity splints for my thumbs, which really do help but, once again, are very uncomfortable and limiting, but they stop the severe pain. They are white clunky things and you can't miss em'.

I also have night splints, which are custom molded, plastic, from an inch above my finger going to almost my elbow...they keep my thumb in a certain position relative to my hand and keep my fingers from contracting and my wrist from flexing, which is what happens to me if I dont wear them.

They are heavy and not comfortable, and can only be worn one arm each night, as it causes one to panic if one wakes with both arms substantially strapped into a splint that one can not get out of. Even with one on, it is very hard to get that super velcro off to free the hand...I have learned to do eye drops one handed...but opening a pill bottle requires 2 hands.

Regardless, my arms are often numb, splint or no splint...but the splints do stop the contractures that can occur when muscle spasms pull joints.

Hang in there for a while with them...I know it is like walking with a big flat rock in your shoe....it should get better. But you may have pain in joints quite a distance from the orthotic.

I know they are really hard to get used to....if things do not get better in a few weeks, call them back. Just be careful for a while so you dont lose your balance.

And stick to the usage schedule.

HeyJoe
01-21-2008, 09:22 PM
Im not sure how common this is but my insurance, and i believe that medicare has the same rule, will only cover orthotics for diabetic neuropathy and , not PN from any other cause. The result of all of the drug trials and research being limited to those with diabetic PN? One cause deserves treatment and another does not? I dont get the logic.

cyclelops
01-22-2008, 06:36 PM
I was able to get my orthotics, all of them, covered by insurance and I do not have diabetes. I have substantial, generalized neuropathy including AN. So far, so good. What they likely won't cover for me is any immunosuppressives as everything keeps coming back with no inflammation....the nerve biopsies were quite abnormal 4 years ago and now the muscle biopsy-abnormal....so it is hard to NOT have a case for the orthotics.

I think it depends on your policy.

I have seen all kinds of splints and braces covered...however, they usually have a 2 year rule...AND...some of the better activity orthotics are not covered in full. Also, I think you will need the PT or OT referral for recommending the orthotic or brace and for fitting....One of the braces I looked at cost roughly $5K...for one. I can not imagine my insurance covering that in full.

It is likely best to call and confirm coverage, as you can get 'sold' an unreturnable device, and be stuck with a bill.....medical supply companies will often do that.

That happened with my fracture 'coil' and boy there was a fight over covering that as well....insurance did finally cover it, thank goodness. But the doctor got very fed up with the whole situation. Docs dont like to fight insurance companies and will simply discharge you or refer you on..

That said, I have seen patients have to fight for wheelchairs when they can no longer walk.


Im not sure how common this is but my insurance, and i believe that medicare has the same rule, will only cover orthotics for diabetic neuropathy and , not PN from any other cause. The result of all of the drug trials and research being limited to those with diabetic PN? One cause deserves treatment and another does not? I dont get the logic.