You’re definitely not alone . Was finally diagnosed about 5 years ago. I don’t get too many major color changes, yet. My doctor only recently came out & told me it would never get better. Most likely worse. Why he waited, I don’t know.
I have similarities: tingles & numbness in hands and feet. Crazy how you can’t feel the skin, but the nerves along the bones are excruciating.
I’ve tried massaging my feet, not to kindly. That seems to help with the cold feet. Compression bandages likes ankle support & quasi knee support bandages-like you’d use for weak ankles, etc- seem to help a bit. I have to use them from below the knee to the balls of my feet about 8-10 hrs a day during the winter.
I had my thyroid removed in 2013 & noticed that if my dosage was off(hypothyroidism) the symptoms were much worse and travelled up my legs & arms(by about 6” & much number).
If I saw color changes that my doctor didn’t address I would check on possible circulation issues, personally though I have too many other issues to not check stuff out & I’m definitely NOT a doctor. I’ve just had it commented on.. then forgotten- it is a named condition but I can’t remember it off the top of my head.
I no longer take showers unless absolutely necessary. Tired of falling. If my feet get way too cold I do a short epsom salt soak of my feet. Sometimes have tried lavender oil rubbed on the soles.
My doctor’s only advice was to wear shoes all the time. And he finally stopped trying to get me to stop using my cane. No bare feet. The best thing about this is being able to crunch my toes or fingers & not really feel it.
I had to explain to the doctor that I don’t usually use the cane to support my weight..more as a form of sensory reinforcement. Like, I don’t know..if I can feel the vibrations & sensory feeling of what I’m walking on then I’m less likely to fall. He shut up after that. Now he worries if he doesn’t see my cane. lol.
Does anyone else have to see your neurologist monthly?
The PN and other neurological issues seem to be way down the list of research and care
My neurologist schedule may allow for bi-monthly visits at best
The groups like Mayo, Duke, etc are almost impossible to get an appointment.
Hopefully this site can allow not only common issues but also some pain relief ideas
I’ll sign off for now but I hope the best for all sufferers
Thank you for your response. I was Dx'd with PN years ago, and it has gradually gotten worse, but it is to the point that it really bothers me. I have the numbness all the time, so yes, I have numbness with the color. But, I only notice the color changes in the shower. That could be because I am standing on my own [w/o cane] for probably the longest period of time that I stand? I have the pins and needles in my feet and a gritty feeling on the bottom of my feet when I walk. My PN is up to just under my knees and there is like a "line" just under my knees, where the PN is up to, and the skin below that line is much whiter and has a completely different feel than the skin elsewhere on my body. My calves and feet are nearly always swollen, but at times my ankles and feet are extremely swollen. [Almost like a cardia involvement] I am up to 1800 -2300mg of Gabapentin a day and take 2 x-strength Tylenol with each dose of Gaba. The relief is not long, but I cannot go over 2300 mg Gaba because I also have an involuntary neurological body movement and it causes me to fall. [I'm a MESS!😉] I haven't found any topicals that help. Thanks again for your empathy and offer to help. I appreciate that very much. I wish I could get a Dr to take as much interest as you! 😊
P
The PN and other neurological issues seem to be way down the list of research and care
My neurologist schedule may allow for bi-monthly visits at best
The groups like Mayo, Duke, etc are almost impossible to get an appointment.
Hopefully this site can allow not only common issues but also some pain relief ideas
I’ll sign off for now but I hope the best for all sufferers
You’re definitely not alone . Was finally diagnosed about 5 years ago. I don’t get too many major color changes, yet. My doctor only recently came out & told me it would never get better. Most likely worse. Why he waited, I don’t know.
I have similarities: tingles & numbness in hands and feet. Crazy how you can’t feel the skin, but the nerves along the bones are excruciating.
I’ve tried massaging my feet, not to kindly. That seems to help with the cold feet. Compression bandages likes ankle support & quasi knee support bandages-like you’d use for weak ankles, etc- seem to help a bit. I have to use them from below the knee to the balls of my feet about 8-10 hrs a day during the winter.
I had my thyroid removed in 2013 & noticed that if my dosage was off(hypothyroidism) the symptoms were much worse and travelled up my legs & arms(by about 6” & much number).
If I saw color changes that my doctor didn’t address I would check on possible circulation issues, personally though I have too many other issues to not check stuff out & I’m definitely NOT a doctor. I’ve just had it commented on.. then forgotten- it is a named condition but I can’t remember it off the top of my head.
I no longer take showers unless absolutely necessary. Tired of falling. If my feet get way too cold I do a short epsom salt soak of my feet. Sometimes have tried lavender oil rubbed on the soles.
My doctor’s only advice was to wear shoes all the time. And he finally stopped trying to get me to stop using my cane. No bare feet. The best thing about this is being able to crunch my toes or fingers & not really feel it.
I had to explain to the doctor that I don’t usually use the cane to support my weight..more as a form of sensory reinforcement. Like, I don’t know..if I can feel the vibrations & sensory feeling of what I’m walking on then I’m less likely to fall. He shut up after that. Now he worries if he doesn’t see my cane. lol.
Does anyone else have to see your neurologist monthly?
Just this past Friday after my EMG, my doctor said my PN was severe/end stage. I was told to always sit in the shower and to always use a cane or walker. I had already been doing this for several years. I will add that I have had this for 13 and originally was just numb toes and balls of my feet. It slowly progressed to my entire feet and up my shins to my knees. Luckily, I have no pain, only weird numbness. But I can feel heat, cold, and pain.
I highly recommend a shower stool to not fall.
Good luck with your medical issues.
@arniecollins
Good suggestion about shower chair. The second I close my eyes I'm on the floor. Sometimes I fall out of the chair if I close my eyes. Guess I need a seat belt.
Take care,
Jake
Just this past Friday after my EMG, my doctor said my PN was severe/end stage. I was told to always sit in the shower and to always use a cane or walker. I had already been doing this for several years. I will add that I have had this for 13 and originally was just numb toes and balls of my feet. It slowly progressed to my entire feet and up my shins to my knees. Luckily, I have no pain, only weird numbness. But I can feel heat, cold, and pain.
I highly recommend a shower stool to not fall.
Good luck with your medical issues.
Thank you. Sincerely. It looks like I’m going to learn more about my condition through this site than from my doctor. He was very close to negligent in not listening to me about my symptoms. My son was born with hypotonic cerebral palsy, requiring braces for his ankles & lower legs. I say this because I used my experience with him to advocate for myself. After nearly several years of pestering and outright making a complete nuisance of myself the neurologist finally wrote a script for leg braces. They cover from the shin to just about the balls of my feet. I’ll still advocate for myself until I get the proper ankle articulations, but they keep me upright. Are think enough to prevent injury and help with my balance.
They are a bit uncomfortable in certain areas, but my back doesn’t hurt as much because my posture is corrected by the support. They also prevent my ankles from twisting/collapsing. Probably one of the first signs I had PN, it had stopped hurting when I should have sprained an ankle.
Right now I’m in a housing situation that doesn’t have a safety bar in the shower, & the removable ones I purchased won’t attach to the tile. (I hate subsidized housing.)
I’ve got a dumb question…I’ve read some posts about the levels of severity of PN..where can I learn about them? Just hitting the internet is asking for all sorts of trouble.
Thanks. I used you link and looked it up. Sounds great and it would be something I definitely would do if I were younger. At my age [77] and with my health conditions, if I tried that, I might never be able to get up! LOL! 😉🤣 But, it looks wonderful and I am sure it would be helpful if I could accomplish it. Sadly I know I could not. I struggle intensely getting up from going down on the floor in any position, or even down to my knees! But, thanks for the info. I appreciate your help.
P
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The PN and other neurological issues seem to be way down the list of research and care
My neurologist schedule may allow for bi-monthly visits at best
The groups like Mayo, Duke, etc are almost impossible to get an appointment.
Hopefully this site can allow not only common issues but also some pain relief ideas
I’ll sign off for now but I hope the best for all sufferers
Have you tried LDN Check out websites low dose naltrexone
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1 ReactionSorry for the tmi overly long post.
No, I do not know what that is, but I will check it out.
Thank you
❣️P
Just this past Friday after my EMG, my doctor said my PN was severe/end stage. I was told to always sit in the shower and to always use a cane or walker. I had already been doing this for several years. I will add that I have had this for 13 and originally was just numb toes and balls of my feet. It slowly progressed to my entire feet and up my shins to my knees. Luckily, I have no pain, only weird numbness. But I can feel heat, cold, and pain.
I highly recommend a shower stool to not fall.
Good luck with your medical issues.
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3 Reactions@arniecollins
Good suggestion about shower chair. The second I close my eyes I'm on the floor. Sometimes I fall out of the chair if I close my eyes. Guess I need a seat belt.
Take care,
Jake
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2 ReactionsThank you. Sincerely. It looks like I’m going to learn more about my condition through this site than from my doctor. He was very close to negligent in not listening to me about my symptoms. My son was born with hypotonic cerebral palsy, requiring braces for his ankles & lower legs. I say this because I used my experience with him to advocate for myself. After nearly several years of pestering and outright making a complete nuisance of myself the neurologist finally wrote a script for leg braces. They cover from the shin to just about the balls of my feet. I’ll still advocate for myself until I get the proper ankle articulations, but they keep me upright. Are think enough to prevent injury and help with my balance.
They are a bit uncomfortable in certain areas, but my back doesn’t hurt as much because my posture is corrected by the support. They also prevent my ankles from twisting/collapsing. Probably one of the first signs I had PN, it had stopped hurting when I should have sprained an ankle.
Right now I’m in a housing situation that doesn’t have a safety bar in the shower, & the removable ones I purchased won’t attach to the tile. (I hate subsidized housing.)
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Hug
1 ReactionI’ve got a dumb question…I’ve read some posts about the levels of severity of PN..where can I learn about them? Just hitting the internet is asking for all sorts of trouble.
Here is the link to one of the online descriptions for "Legs up the wall". Don't forget to read the benefits.
http://www.narayanahealth.org/blog/benefits-of-legs-up-the-wall-pose/
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3 ReactionsThanks. I used you link and looked it up. Sounds great and it would be something I definitely would do if I were younger. At my age [77] and with my health conditions, if I tried that, I might never be able to get up! LOL! 😉🤣 But, it looks wonderful and I am sure it would be helpful if I could accomplish it. Sadly I know I could not. I struggle intensely getting up from going down on the floor in any position, or even down to my knees! But, thanks for the info. I appreciate your help.
P
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