I was diagnosed with peripheral neuropathy but a year later told it was sensorimotor polyneuropathy. My feet have deformed to a high arch, claw toes, toes feel glued together and cant move them. My left ankle feels like it could give out anytime and an AFO doesnt help with the rubber feel. My hands are purpleish and tight and I am not having bowel movements. It started with tightness in my legs and being unable to stand still. It took awhile to get diagnosed …. And now Im walking with a cane. Im terrified I have charcot and have mentioned this to doctors. The thing is Im not even 50 so my life is basically over. The way its progressing I have zero quality of life and do not see any hope for the future.
I tried to make a few posts but they never posted. Perhaps they were too grim and not approved but I cant pretend to be happy at this point. Not looking for pity just telling it like it is I guess.
Oh and it feels like Im walking on bone or then on sponges with my toes feeling like gelly. At times I wish I had MS so Id get taken more seriously and there at least would be some kind of treatment. No one even knows what this is or tells me its in my head and just depressed….
This disease is alot more serious then I was lead to believe about it. Actually I wasnt really told anything other than its neuropathy. Most of what I learned about it was from the internet. Originally I thought I would have to learn to live with strange sensations because I never really had the pain others experienced. So when I read and found out about the motor side my stomache sank and yup come to find out I have that too….currently waiting from some tests from a gastro but its going to be pointless, he allready told me Im too young and Im just depressed….. this sucks this disease. I also found out on my own that its progressive not from my original diagnosis.
Hello, curious as to why my posts are deleted. Any discussion Ive tried to start has not been posted as well as the comment I left on this thread with my symptoms as I see others doing? Its hard enough trying to live with this and being dismissed by doctors and know even online on a support group. I dont understand? Is it because people think I am lieing due to my younger age at 49? Please let me know what I am doing wrong or what rules I am breaking as I dont mean to.
Hello, curious as to why my posts are deleted. Any discussion Ive tried to start has not been posted as well as the comment I left on this thread with my symptoms as I see others doing? Its hard enough trying to live with this and being dismissed by doctors and know even online on a support group. I dont understand? Is it because people think I am lieing due to my younger age at 49? Please let me know what I am doing wrong or what rules I am breaking as I dont mean to.
I am new to this group so please forgive me if I am not following the right protocol. Is anyone on this site been experimenting with red light therapy for neuropathy in feet and lower limbs???!
I am new to this group so please forgive me if I am not following the right protocol. Is anyone on this site been experimenting with red light therapy for neuropathy in feet and lower limbs???!
Yes, I am using it for the first time. One of the issues I had initially was understanding the different modes and levels of intensity. The standard red light therapy units have three modes: 1) regular 2) 10hz pulse 3) 40hz pulse. It didn't explain which one to use for my specific symptom(s). I had the same problem with the 5 intensity levels. I researched these questions on line and got some answers. Bear in mind this is not a quick fix but a long term treatment program. I just started using the device this week so I can't draw any conclusions except for healing some skin damage I had on my big toe. It really helped with that problem expediting the healing. My unit is for feet and ankle areas only which is my affected area for PN. I also use a device called Neurogo which provides electrical impulses to the feet, ankles, calves and thighs to stimulate blood flow. You can feel it working but it is also a long term "solution". The jury's still out for both of these devices since I'm just a newbie. I will post progress reports periodically.
Yes, I am using it for the first time. One of the issues I had initially was understanding the different modes and levels of intensity. The standard red light therapy units have three modes: 1) regular 2) 10hz pulse 3) 40hz pulse. It didn't explain which one to use for my specific symptom(s). I had the same problem with the 5 intensity levels. I researched these questions on line and got some answers. Bear in mind this is not a quick fix but a long term treatment program. I just started using the device this week so I can't draw any conclusions except for healing some skin damage I had on my big toe. It really helped with that problem expediting the healing. My unit is for feet and ankle areas only which is my affected area for PN. I also use a device called Neurogo which provides electrical impulses to the feet, ankles, calves and thighs to stimulate blood flow. You can feel it working but it is also a long term "solution". The jury's still out for both of these devices since I'm just a newbie. I will post progress reports periodically.
@banjoman
Thank you so much for your comments. I appreciate that you mentioned the intensity levels, I am just starting the process of finding the right product. I too will be looking for a unit that will target my feet and lower legs. I understand that this will be a slow process but I really am anxious to start. Thank you again. I would love to hear how you are getting along. I will stay in touch also, I know I will have more questions.
@banjoman
Thank you so much for your comments. I appreciate that you mentioned the intensity levels, I am just starting the process of finding the right product. I too will be looking for a unit that will target my feet and lower legs. I understand that this will be a slow process but I really am anxious to start. Thank you again. I would love to hear how you are getting along. I will stay in touch also, I know I will have more questions.
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I was diagnosed with peripheral neuropathy but a year later told it was sensorimotor polyneuropathy. My feet have deformed to a high arch, claw toes, toes feel glued together and cant move them. My left ankle feels like it could give out anytime and an AFO doesnt help with the rubber feel. My hands are purpleish and tight and I am not having bowel movements. It started with tightness in my legs and being unable to stand still. It took awhile to get diagnosed …. And now Im walking with a cane. Im terrified I have charcot and have mentioned this to doctors. The thing is Im not even 50 so my life is basically over. The way its progressing I have zero quality of life and do not see any hope for the future.
I tried to make a few posts but they never posted. Perhaps they were too grim and not approved but I cant pretend to be happy at this point. Not looking for pity just telling it like it is I guess.
Oh and it feels like Im walking on bone or then on sponges with my toes feeling like gelly. At times I wish I had MS so Id get taken more seriously and there at least would be some kind of treatment. No one even knows what this is or tells me its in my head and just depressed….
This disease is alot more serious then I was lead to believe about it. Actually I wasnt really told anything other than its neuropathy. Most of what I learned about it was from the internet. Originally I thought I would have to learn to live with strange sensations because I never really had the pain others experienced. So when I read and found out about the motor side my stomache sank and yup come to find out I have that too….currently waiting from some tests from a gastro but its going to be pointless, he allready told me Im too young and Im just depressed….. this sucks this disease. I also found out on my own that its progressive not from my original diagnosis.
@geoffwag3, how long have you been dealing with neuropathy? Where? Do you have numbness only or pain as well?
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Hello, curious as to why my posts are deleted. Any discussion Ive tried to start has not been posted as well as the comment I left on this thread with my symptoms as I see others doing? Its hard enough trying to live with this and being dismissed by doctors and know even online on a support group. I dont understand? Is it because people think I am lieing due to my younger age at 49? Please let me know what I am doing wrong or what rules I am breaking as I dont mean to.
@megidigo, let me look into it. If you have any issues with the site, you can find more help in the Help Center https://connect.mayoclinic.org/help-center/ or send the moderating team a message using this form https://connect.mayoclinic.org/help-center/
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2 Reactions@colleenyoung
Thank you
I am new to this group so please forgive me if I am not following the right protocol. Is anyone on this site been experimenting with red light therapy for neuropathy in feet and lower limbs???!
Yes, I am using it for the first time. One of the issues I had initially was understanding the different modes and levels of intensity. The standard red light therapy units have three modes: 1) regular 2) 10hz pulse 3) 40hz pulse. It didn't explain which one to use for my specific symptom(s). I had the same problem with the 5 intensity levels. I researched these questions on line and got some answers. Bear in mind this is not a quick fix but a long term treatment program. I just started using the device this week so I can't draw any conclusions except for healing some skin damage I had on my big toe. It really helped with that problem expediting the healing. My unit is for feet and ankle areas only which is my affected area for PN. I also use a device called Neurogo which provides electrical impulses to the feet, ankles, calves and thighs to stimulate blood flow. You can feel it working but it is also a long term "solution". The jury's still out for both of these devices since I'm just a newbie. I will post progress reports periodically.
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Helpful -
Hug
2 Reactions@banjoman
Thank you so much for your comments. I appreciate that you mentioned the intensity levels, I am just starting the process of finding the right product. I too will be looking for a unit that will target my feet and lower legs. I understand that this will be a slow process but I really am anxious to start. Thank you again. I would love to hear how you are getting along. I will stay in touch also, I know I will have more questions.
This is a great information sharing site. We are all in the same boat and
seek credible information. What better overseer than the Mayo Clinic?