AngieP - I too see a podiatrist every 9 - 10 weeks, my Medicare plan pays for the visit, and I have my feet examined as well due to my numbness, don't want to take chances. Podiatrist, my primary doc along with 5 other neuro docs all have given me the same answer, no cure for numbness due to PN and yes, bad balance is part of the picture. I do take many of the supplements that Mentor John Bishop has brought to surface which I feel help. One neuro doc in 2005 said to me "keep moving" and I took that as the best advice I ever got. Trust me, it is a struggle at minimum, but I feel necessary. I don't suggest this as somebody on the outside looking in without dealing with PN. For me, I have determined to keep a positive frame of mind and not fight this disease rather how to live with it. I am now in PT for balance therapy. Slight help so far with balance.
Just wondering - with your PN (axonal sensorimotor), can you do steps? With me, when it all came on suddenly 6 yrs ago, the major collapse was in the knees. They kept buckling; the nerves and muscles would no longer work together to allow me to kneel, bend, then stand. With PT and much muscle strengthening I can walk, bend knees enough to do that, drive, and squat a few inches only. What I can’t do is hop, skip, jump, run, or jog, or step up unassisted for more than 6 inches (and that’s a risky step) If forced to climb a few or many steps, I need rails and it’s a major arm and upper body exercise as they’re doing the lifting (and they pay for it later) Walking down steps (with rails) is harder than going up, but when I have to do them, I do. Ladders, even step stools, I cannot do, and though I test myself on occasion by stepping up on one rung to reach a high cabinet or shelf, holding on for dear life to cabinets, counters or appliances while doing so, I know I’m taking a terribly stupid risk knowing the consequences a fall could have have for my already disadvantaged situation. So my question for you is how you might do it? Any therapeutic exercises or tricks that help you climb? Thanks, Debbie
Just wondering - with your PN (axonal sensorimotor), can you do steps? With me, when it all came on suddenly 6 yrs ago, the major collapse was in the knees. They kept buckling; the nerves and muscles would no longer work together to allow me to kneel, bend, then stand. With PT and much muscle strengthening I can walk, bend knees enough to do that, drive, and squat a few inches only. What I can’t do is hop, skip, jump, run, or jog, or step up unassisted for more than 6 inches (and that’s a risky step) If forced to climb a few or many steps, I need rails and it’s a major arm and upper body exercise as they’re doing the lifting (and they pay for it later) Walking down steps (with rails) is harder than going up, but when I have to do them, I do. Ladders, even step stools, I cannot do, and though I test myself on occasion by stepping up on one rung to reach a high cabinet or shelf, holding on for dear life to cabinets, counters or appliances while doing so, I know I’m taking a terribly stupid risk knowing the consequences a fall could have have for my already disadvantaged situation. So my question for you is how you might do it? Any therapeutic exercises or tricks that help you climb? Thanks, Debbie
Debbie - Oh brother, we do have very similar effects from PN. I am unable to lift the front of my feet off the ground, jumping up is impossible due to drop foot. I have not run since 2014 which was something I did like. Steps are becoming an issue and at times the front of a foot will not clear the step and bang. I have upper body strength which I need to hold the railing and I use that for support to assist in step climbing. I won't do a ladder either. My balance is a mess to say the least. You need to have good arm strength to assist in a house with steps. I go to PT 2 days a week when I'm up to it and much relates to balance exercises and strengthen leg muscles. Best tip I can give is to watch your feet going up and down steps and if you can, have a railing on both sides of the steps. That will improve balance going up and down and build up arm and upper body strength the best you can. Every step is a risk so be careful and again...keep walking...keep moving. The best to you!
Had not thought about appointment with neurologist, my GP didnt seem to interested and did not even want to see me when I told him, and he is in Kingsville, ON, and we have moved to Chatham which is over an hour away and have not found a doctor here yet.....will follow up on sites you gave me & thank you for your response..
Debbie - Oh brother, we do have very similar effects from PN. I am unable to lift the front of my feet off the ground, jumping up is impossible due to drop foot. I have not run since 2014 which was something I did like. Steps are becoming an issue and at times the front of a foot will not clear the step and bang. I have upper body strength which I need to hold the railing and I use that for support to assist in step climbing. I won't do a ladder either. My balance is a mess to say the least. You need to have good arm strength to assist in a house with steps. I go to PT 2 days a week when I'm up to it and much relates to balance exercises and strengthen leg muscles. Best tip I can give is to watch your feet going up and down steps and if you can, have a railing on both sides of the steps. That will improve balance going up and down and build up arm and upper body strength the best you can. Every step is a risk so be careful and again...keep walking...keep moving. The best to you!
It maybe time to think about stair chairs or an indoor garage elevator to eliminate the threat of a fall up or down stairs. My neuropathy hit me severely and suddenly from my knees down, with a dropped left ankle in the mix. My husband had a stair lift put indoors and outdoors, and after deciding to stay put, eventually we built a garage with a wheelchair elevator to get me in and out of our house safely and in all weather.
This disease is expensive, despite insurance, but there are ways to get upstairs without risking a fall. Best of luck to us!
Debbie - Oh brother, we do have very similar effects from PN. I am unable to lift the front of my feet off the ground, jumping up is impossible due to drop foot. I have not run since 2014 which was something I did like. Steps are becoming an issue and at times the front of a foot will not clear the step and bang. I have upper body strength which I need to hold the railing and I use that for support to assist in step climbing. I won't do a ladder either. My balance is a mess to say the least. You need to have good arm strength to assist in a house with steps. I go to PT 2 days a week when I'm up to it and much relates to balance exercises and strengthen leg muscles. Best tip I can give is to watch your feet going up and down steps and if you can, have a railing on both sides of the steps. That will improve balance going up and down and build up arm and upper body strength the best you can. Every step is a risk so be careful and again...keep walking...keep moving. The best to you!
I am lucky because I have my wife do anything that requires a step stool or ladder, and I have only one step up to enter our house and it is all on one level. When I go to the library I can manage the stairs using the hand rails. The only way I can stand in one spot without a cane is to march in place (like back when I was in basic training).
It maybe time to think about stair chairs or an indoor garage elevator to eliminate the threat of a fall up or down stairs. My neuropathy hit me severely and suddenly from my knees down, with a dropped left ankle in the mix. My husband had a stair lift put indoors and outdoors, and after deciding to stay put, eventually we built a garage with a wheelchair elevator to get me in and out of our house safely and in all weather.
This disease is expensive, despite insurance, but there are ways to get upstairs without risking a fall. Best of luck to us!
efgh1020 - You have brought up very good suggestions that my wife and I have also discussed. I think the stair chair will be something we need to look into, or we might use a first level bedroom/bath now not in use. I am not at that point, yet. Both of us like our home having been here 36 years and have no interest in selling. You are 100% right about the cost of this disease, some day, I am hopeful that insurance companies will become more liberal minded in their coverages involving PN. Like yourself, whatever accommodations we may need to do will be done with safety as a priority. Our main living level is 2 steps off the ground so that is a plus. Be safe and let's all stay positive.
I am hoping that someone with similar symptoms could share any advice on lessening the specific pain that I experience. After a EMG test I was diagnosed with moderate neuropathy and mild radiculopathy. It seems to be confined mostly to my feet, where I have a combination of numbness (feeling cold when they are not cold), stinging or burning, soreness, and occasional jolts that are like an electrical shock. Often it is concentrated in my toes, but also affects my whole feet. Occasionally one of my feet seems to "cramp" up. Uric acid tests rule out gout. I have tried various medicines, both prescription and over-the-counter (Gabapentin, Lyrica, Motrin, Meloxicam, etc. ) I have soaked my feet in warm water, with and without Epsom salts, tried massaging them, and elevating them. If you have similar symptoms, do you have any suggestions that helped you? Thank you.
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My pain is horrible. From the hips through the buttocks down both legs. No relief except my anxiety medicine that puts me to sleep.
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2 ReactionsJust wondering - with your PN (axonal sensorimotor), can you do steps? With me, when it all came on suddenly 6 yrs ago, the major collapse was in the knees. They kept buckling; the nerves and muscles would no longer work together to allow me to kneel, bend, then stand. With PT and much muscle strengthening I can walk, bend knees enough to do that, drive, and squat a few inches only. What I can’t do is hop, skip, jump, run, or jog, or step up unassisted for more than 6 inches (and that’s a risky step) If forced to climb a few or many steps, I need rails and it’s a major arm and upper body exercise as they’re doing the lifting (and they pay for it later) Walking down steps (with rails) is harder than going up, but when I have to do them, I do. Ladders, even step stools, I cannot do, and though I test myself on occasion by stepping up on one rung to reach a high cabinet or shelf, holding on for dear life to cabinets, counters or appliances while doing so, I know I’m taking a terribly stupid risk knowing the consequences a fall could have have for my already disadvantaged situation. So my question for you is how you might do it? Any therapeutic exercises or tricks that help you climb? Thanks, Debbie
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2 Reactions2 types:
Axonal Polyneuropathy
Anti MAG Antibodies
Are there any studies/trials available for either one of these?
Hello @artistwagoodi, Welcome to Connect. Here are links to the studies on ClinicalTrials.Gov:
Axonal Polyneuropathy
https://clinicaltrials.gov/ct2/results?cond=Axonal+Polyneuropathy&term=&cntry=&state=&city=&dist=
Anti MAG Antibodies
https://clinicaltrials.gov/ct2/results?cond=Anti+MAG+Antibodies&term=&cntry=&state=&city=&dist=
Have you been diagnosed with both conditions?
Debbie - Oh brother, we do have very similar effects from PN. I am unable to lift the front of my feet off the ground, jumping up is impossible due to drop foot. I have not run since 2014 which was something I did like. Steps are becoming an issue and at times the front of a foot will not clear the step and bang. I have upper body strength which I need to hold the railing and I use that for support to assist in step climbing. I won't do a ladder either. My balance is a mess to say the least. You need to have good arm strength to assist in a house with steps. I go to PT 2 days a week when I'm up to it and much relates to balance exercises and strengthen leg muscles. Best tip I can give is to watch your feet going up and down steps and if you can, have a railing on both sides of the steps. That will improve balance going up and down and build up arm and upper body strength the best you can. Every step is a risk so be careful and again...keep walking...keep moving. The best to you!
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3 ReactionsCheckout foundation for Peripheral Neuropathy. They list neurologists by State and even by country.
https://www.foundationforpn.org/
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3 ReactionsIt maybe time to think about stair chairs or an indoor garage elevator to eliminate the threat of a fall up or down stairs. My neuropathy hit me severely and suddenly from my knees down, with a dropped left ankle in the mix. My husband had a stair lift put indoors and outdoors, and after deciding to stay put, eventually we built a garage with a wheelchair elevator to get me in and out of our house safely and in all weather.
This disease is expensive, despite insurance, but there are ways to get upstairs without risking a fall. Best of luck to us!
-
Like -
Helpful -
Hug
4 ReactionsI am lucky because I have my wife do anything that requires a step stool or ladder, and I have only one step up to enter our house and it is all on one level. When I go to the library I can manage the stairs using the hand rails. The only way I can stand in one spot without a cane is to march in place (like back when I was in basic training).
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Helpful -
Hug
4 Reactionsefgh1020 - You have brought up very good suggestions that my wife and I have also discussed. I think the stair chair will be something we need to look into, or we might use a first level bedroom/bath now not in use. I am not at that point, yet. Both of us like our home having been here 36 years and have no interest in selling. You are 100% right about the cost of this disease, some day, I am hopeful that insurance companies will become more liberal minded in their coverages involving PN. Like yourself, whatever accommodations we may need to do will be done with safety as a priority. Our main living level is 2 steps off the ground so that is a plus. Be safe and let's all stay positive.
-
Like -
Helpful -
Hug
3 ReactionsI am hoping that someone with similar symptoms could share any advice on lessening the specific pain that I experience. After a EMG test I was diagnosed with moderate neuropathy and mild radiculopathy. It seems to be confined mostly to my feet, where I have a combination of numbness (feeling cold when they are not cold), stinging or burning, soreness, and occasional jolts that are like an electrical shock. Often it is concentrated in my toes, but also affects my whole feet. Occasionally one of my feet seems to "cramp" up. Uric acid tests rule out gout. I have tried various medicines, both prescription and over-the-counter (Gabapentin, Lyrica, Motrin, Meloxicam, etc. ) I have soaked my feet in warm water, with and without Epsom salts, tried massaging them, and elevating them. If you have similar symptoms, do you have any suggestions that helped you? Thank you.
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Helpful -
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