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Old 12-28-2007, 08:22 AM   #1
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dan4444 HB User
anyone expiriencing loss of balance

I have been recently diagnosed with pn. I have been having trouble with weakness, numbness and burning in my arm, legs and hands. Recently, I have been having problems with my balance. Is anyone expiriencing anything similar?

 
Old 12-28-2007, 11:07 AM   #2
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kelsey1 HB Userkelsey1 HB User
Re: anyone expiriencing loss of balance

yes,i too have had this happen to me. i have servre cspine stensiis and many other troubles in the cspine also in my arms i have the numbsness and i have one hand that is paralis,in my legs also some numbless.in my last fews months i have really notice that i was clubsmy in my gait,i tought that was all,but it is getting worst and sometimes when i first get up from my chair i kind of go backwards like a drunk,i did some resreach and it comes from my stensosis. wierd. good luck keep us posted kelsey

 
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Old 12-28-2007, 11:31 PM   #3
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paulo60 HB Userpaulo60 HB User
Re: anyone expiriencing loss of balance

Quote:
Originally Posted by dan4444 View Post
I have been recently diagnosed with pn. I have been having trouble with weakness, numbness and burning in my arm, legs and hands. Recently, I have been having problems with my balance. Is anyone expiriencing anything similar?

PN quite often affects your 'sense of position', and because the sensory nerves are impaired your ability to feel or sense the floor beneath your feet is also impaired. Imbalance and gait problems are common in PN. When I walk down the street I can stride evenly and straight for about a block. After that I experience a slowdown and lead like feeling in my legs, and my gait becomes disturbed so that I begin to sway a bit, kind of like someone who has had too much to drink If it becomes severe, you may need a cane or a stroller, something to help keep you from staggering and/or falling. Peace.

 
Old 12-29-2007, 08:44 AM   #4
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Re: anyone expiriencing loss of balance

paul is right but you also need to have an MRI done from the c spine on down just to rule out any possible other reasons for this.anything that could possibly affect the spinal cord itself,just could possibly create what you are experiencing.you just really need this to rule out any other possible causes for your WHOLE level of symptoms.there just 'could' be other reasons not even related to PN itself but could create the very same symptoms that you are currently experincing.believe me when i say that you just have no real clue as to what may be lurking inside your cord or anywhere in your body til you actually take a good hard look inside.i and my son have had many little ugly 'suprises" over the past eight years that we never ever had a clue about but were there since birth.you just need to rule out every other possiblity before settling with any actual Dx of anything.you just need to know for sure,thats all.please keep us posted.Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 12-29-2007, 01:39 PM   #5
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CAROLYN000 HB User
Re: anyone expiriencing loss of balance

I have PN and numb feet. Oddly I can feel the brake and accelerator so I can drive thank goodness! I keep a walker by each chair I use. When I
first stand up I have the feeling I am going to pitch forward so I grab the
walker. I have Neurelief that I ordered online. It is advertised as a Nueropathy foot cream.

 
Old 12-29-2007, 03:44 PM   #6
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paulo60 HB Userpaulo60 HB User
Re: anyone expiriencing loss of balance

Quote:
Originally Posted by CAROLYN000 View Post
I have PN and numb feet. Oddly I can feel the brake and accelerator so I can drive thank goodness! I keep a walker by each chair I use. When I
first stand up I have the feeling I am going to pitch forward so I grab the
walker. I have Neurelief that I ordered online. It is advertised as a Nueropathy foot cream.

Hi Carolyn,
Does the Neurelief help with any pain or burning sensations? It is odd that even tho our feet may be numb, we can feel the ground and are able to drive. That's because there are literally thousands of tiny peripheral sensory nerves. I normally do not know I have touched down until I feel the shock of my foot making contact with the ground, but at least I feel that. Happy New Year! Paulo

 
Old 12-30-2007, 10:31 AM   #7
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dan4444 HB User
Re: anyone expiriencing loss of balance

Quote:
Originally Posted by kelsey1 View Post
yes,i too have had this happen to me. i have servre cspine stensiis and many other troubles in the cspine also in my arms i have the numbsness and i have one hand that is paralis,in my legs also some numbless.in my last fews months i have really notice that i was clubsmy in my gait,i tought that was all,but it is getting worst and sometimes when i first get up from my chair i kind of go backwards like a drunk,i did some resreach and it comes from my stensosis. wierd. good luck keep us posted kelsey

 
Old 01-05-2008, 03:31 PM   #8
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trish777 HB User
Re: anyone expiriencing loss of balance

OMG! I thought I was the only one who has poor balance. My Dr says the neuropathy makes feeling the ground difficult, so you need your eyes to keep the horizon in balance. I notice if I am walking anywhere, I cannot look up or around or I stumble. To the point of having to grab onto something. yikes! lol Also, about driving : I am having a difficult time. I can only drive my own car, because I have all actions memorized. I don't want to tell people, so I just say I don't like to drive others' cars, even rentals! (Because I can't feel the pedals.) Now my most serious problem is Charcot foot. I wish there was a support group for it, because it is a horrible condition. I am getting ulcers on the bottom of my foot due to the bones shifting and even with a crow walker, they are slow to heal.

 
Old 01-05-2008, 06:19 PM   #9
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paulo60 HB Userpaulo60 HB User
Re: anyone expiriencing loss of balance

Quote:
Originally Posted by trish777 View Post
OMG! I thought I was the only one who has poor balance. My Dr says the neuropathy makes feeling the ground difficult, so you need your eyes to keep the horizon in balance. I notice if I am walking anywhere, I cannot look up or around or I stumble. To the point of having to grab onto something. yikes! lol Also, about driving : I am having a difficult time. I can only drive my own car, because I have all actions memorized. I don't want to tell people, so I just say I don't like to drive others' cars, even rentals! (Because I can't feel the pedals.) Now my most serious problem is Charcot foot. I wish there was a support group for it, because it is a horrible condition. I am getting ulcers on the bottom of my foot due to the bones shifting and even with a crow walker, they are slow to heal.

Hi Trish,
There are a few PN websites that offer info and support to sufferers of CMT neuropathy; in fact you can find support and information here under the title page of "neuropathy". I too have almost all the identical problems you just listed, in terms of balance and changes in the bony structure of the feet. My podiatrist calls them "skinny, bony and bad", which shows he has run out of technical terminology. May I recommend that you perform a daily ritual of checking your feet, and massaging a good quality foot lotion on them, to prevent drying and cracking which can lead to ulcers. Also, if you have insurance, you sound as if you desperately need medical help with your feet. Medicare I recently discovered, will not cover orthotics unless the underlying diagnosis is diabetes; so for us CMT patients we need to make arrangements with the doctors office to pay for the same treatment that diabetics get, which is to have the foot supported, and where nerve damage has caused atrophy in certain tendons and muscles involved in proper foot function, we also need corrective orthotics. And lastly, we need shoes that will also protect those of us who get the big bent toe effect. But you should notice a big difference in how your feet feel if you spend some time each day massaging them with a lotion, and do everything in your power to protect them as best as you can, as this disease can take you completely off your feet if you don't try everything to prevent it, and put you in a wheelchair. That is just my opinion, as I see the same processes developing in my feet, and after viewing x-rays taken last week and seeing with my own eyes what my feet actually look like underneath the skin, I was totally shocked. They didn't look good at all Maybe spending some time in a caring manner each day will give new life to worn out clod hoppers...Paulo

 
Old 01-27-2008, 05:45 PM   #10
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jean33 HB User
Re: anyone expiriencing loss of balance

I too have a problem with my balance,the first time was funny & scarey.Was taking a shower,washed my face and down I went.Our toilet/bathtub area was quite small,so my hubby was literaly locked out to rescue me with the door closed.After I untangled my arms & legs wrapped around the toilet,I was fine.A bit embarresed.We had a good laugh and a story to tell friends about neuropathy.~~~~We might as well laugh at ourselves,we have to live with neuropathy. I wish all a good day!

 
Old 04-01-2008, 10:59 AM   #11
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casse51 HB User
Re: anyone expiriencing loss of balance

Hi there.
Well I have Loss of balance really bad to the point that when I walk I have to make sure there is something for me to hang on to .. My kids are my support.. (which they hate). DR tells me nothing he can do and it is just something I have to live with.. So many people think im drunk all the time but im use to it now. It dont bother me anymore.. I am 34 by the way.. Just so you know you are not out there alone. There are many others of us.. Hope someone finds out what your reason is .. Bust of luck to ya .

 
Old 04-02-2008, 07:53 AM   #12
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mrbojangle HB User
Re: anyone expiriencing loss of balance

Hi All:
I have been diagnosed with type 2 diabetes about 6 years ago and am also suffering from P.N. as a by-product; lately I too have a problem with balance when walking. I noticed that more and more I have to really concentrate on my walking and not look all around me or I'll start staggering like I've had too much to drink. I am also still able to drive, but also only our car because I have the feel of the pedals,etc. I spent 4 days at Mayo Clinic only to be told "yes, you have P.N." I've been to a neurologist who prescribed Neurontin(sp) to no avail, I've searched the web,joined the P.N. group, pestered our family practitioner, and can only gather that it's a terrible condition that has at this time no cure!!
During this political campaign season wouldn't it be wonderful if all the millions spent could be used to find cures for so many illnesses instead of being spent on "mud-slinging".

 
Old 04-03-2008, 09:39 AM   #13
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Allegra HB User
Re: anyone expiriencing loss of balance

The balance thing is a real problem. Whenever we had ice this winter I was afraid every time I had to leave the house. Then there are the offices with miles of shining slippery tile. It almost makes me have a panic attack when I know I have to go to one...especially hospital corridors! I think my PN came from a medicine I was taking, I know it affected my night vision. What I hate is that the feet are burning and freezing cold at the same time. I use baby cream every night as a massage and they feel better for a while. It sounds ridiculous but he cat having "happy paws" on them is the best massage. Does anyone find that the worst time is when you go to bed? Or that standing isn't as bad as laying down ?

 
Old 05-19-2008, 07:27 AM   #14
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Re: anyone expiriencing loss of balance

Quote:
Originally Posted by mrbojangle View Post
Hi All:
I have been diagnosed with type 2 diabetes about 6 years ago and am also suffering from P.N. as a by-product; lately I too have a problem with balance when walking. I noticed that more and more I have to really concentrate on my walking and not look all around me or I'll start staggering like I've had too much to drink. I am also still able to drive, but also only our car because I have the feel of the pedals,etc. I spent 4 days at Mayo Clinic only to be told "yes, you have P.N." I've been to a neurologist who prescribed Neurontin(sp) to no avail, I've searched the web,joined the P.N. group, pestered our family practitioner, and can only gather that it's a terrible condition that has at this time no cure!!
During this political campaign season wouldn't it be wonderful if all the millions spent could be used to find cures for so many illnesses instead of being spent on "mud-slinging".
Dear Mr Bojangles, Have same problem which did have one advantage. Went on a cruise and weather bad - Force 10 - everyone was walking like me just a shame next day when the sea was like a millpond I was still staggering. Luckily I live in a small comunity in the Orkney Islands and everyone knows me - well maybe not everyone - but when I'm away from home and out of my comfort Zone its v. embarrassing.For ages I resisted using a stick but a friend suggested a ski pole and not only does it help balance but points out to others a problem and not being under the influence.Worst balance problems like you, on ice, or walking in the dark. My neurologist said this would be the case. Said most likely due to virus with no likely cure. Sense of humour very important. Good Luck Jenny. Stromness. Orkneys.

 
Old 05-19-2008, 08:27 AM   #15
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chicagoprinter HB User
Smile Re: anyone expiriencing loss of balance

Hi Everyone,

You bet, to everything that's been said on this post. I'm a typical non-joiner type of person but, somehow I couldn't avoid joining your "club." My doc tells me the same thing that all you guys have said. He's added one important item that is not mentioned in this post. "Use it or lose it." He's a believer in exercising every other day any way you can. Use light weights for your arms, do leg exercises, and walk as far, and as much as you can without feeling exhausted. The more the better. I push myself but, I still notice that each year I'm doing less than the year before. I'm not exactly a lover of exercise. I notice that when I get lazy and don't keep moving, I get weaker in my arms and my legs. And it doesn't take long. Three or 4 days and I'm feeling it.

So far I'm still driving. I have the same problem the rest of you have with trouble feeling the gas or brake pedal. Wonder of wonders, my driving style has become much more conserative. I stay far away from the car in front of me so that I have more time to stop in an emergency situation. Also, for the first time in the history of me terroring other drivers in my car, I actually only do speed limit or less. ( I used to curse at old people that drove that way).

I fought it but, just bought a scooter as, we are going on vacation. Realistically, there is no way that I can keep up with ABP unless I use this thing.

I was told that each of us is different in, shall we say progression, or if you like, regression of this disease. Since there is not much we can do about it, I do the best I can with what I've got to work with.

It's great to be able to talk with people who can relate.

Thanks for being here.

Chicagoprinter

 
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