1. < Neuropathy

Now what! Neuropathy in feet and ankles.. Numbness in hands and arms

Posted by hotfooted @hotfooted, Oct 4, 2020

I don't understand why all 4 limbs are getting neuropathy.. Is this still peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

lorirenee1 | @lorirenee1 | Oct 5, 2020
In reply to @jesfactsmon "@lorirenee1 @jimhd Renee @faithwalker007 mentioned yesterday that she has a DRG stimulator implant as well and..." + (show)
@jesfactsmon

@lorirenee1 @jimhd
Renee @faithwalker007 mentioned yesterday that she has a DRG stimulator implant as well and I asked her how it was going for her. Hope she replies. Hank

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@jesfactsmon Thanks, Hank, for letting me know about Renee and her DRG. I did find her post and replied already. YOU DA BEST!!!! Lori

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lorirenee1 | @lorirenee1 | Oct 5, 2020
In reply to @lioness "@lorirenee1 I'm sorry your stimulator implant hadn't helped you I'm seeing my neurosurgeon tomorrow as I've..." + (show)
@lioness

@lorirenee1 I'm sorry your stimulator implant hadn't helped you I'm seeing my neurosurgeon tomorrow as I've had a rough week so I'm hoping for a change of meds or something he can do for me

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@lioness Thanks for your empathy, as it goes a long way!!!! Yes, the DRG is doing very little, if anything. Best of luck at the neurosurgeon. Pain is a terrible road to live on. My best to you, Lori

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ken82 | @ken82 | Oct 5, 2020

@lorirenee1 @johnbishop You may find this NIH study on Kratom helpful.. It is from a credible and respected source.. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5402527/ The Abstract conclusions are as follows..
"Our data analysis has not determined if biochemical benefits of kratom may prove to outweigh its toxicity and risks. On the contrary, it seems that its potential side effects outweigh the benefits, and severe and real health hazards can, insidiously, lead to death. Kratom clinical, psychological, and medical manifestations can be disturbing. Kratom (M. speciosa) use, among multiple compounds of the leaf, appear to be increasing in the Western world. Promising methods to accurately identify kratom compounds are still ongoing."

"Keywords: Mitragyna, Mitragyna speciosa extract, kratom, benefits, risks, fatality, toxicity"

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sunnyflower | @sunnyflower | Oct 8, 2020
In reply to @lois6524 "that's why it is called peripheral neuropathy -- it affects first the nerves that go the..." + (show)
@lois6524

that's why it is called peripheral neuropathy -- it affects first the nerves that go the furthest from your spine,where the nerves are the longest === i.e. feet and legs, hands and arms

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Hello Lois, I have SFPN almost all of my body; numb/burn/sting/pins&needles. Peripheral neuropathy means going outside the spinal canal (cord) to the body. I always thought that it was only in lower legs and feet. Boy was I ignorant! Hope that helps. I hope you are doing better than tolerable today and in general. Warmest wishes, Sunnyflower 😊

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sparshall | @sparshall | Oct 15, 2020

If your neuropathy affects your legs/feet and arms/hands, make sure you are getting a correct diagnosis. CIDP -- chronic inflammatory demyelinating polyneuropathy -- is characterized by symmetrical nerve damage in both legs, both feet, both arms, both hands. CIDP is rare and often misdiagnosed. It is considered an autoimmune disease and is treated with immune system modulators, primarily IVIG (regular infusions of gammaglobulin). Left untreated, or misdiagnosed and treated only for pain, CIDP can lead to permanent paralysis and a lifetime in a wheelchair. As a CIDP patient, I urge you to bring up the possibility of CIDP with your neurologist if you have symptoms in both legs or both arms or all four at the same time.

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3 replies
Hank | @jesfactsmon | Oct 15, 2020
In reply to @sparshall "If your neuropathy affects your legs/feet and arms/hands, make sure you are getting a correct diagnosis...." + (show)
@sparshall

If your neuropathy affects your legs/feet and arms/hands, make sure you are getting a correct diagnosis. CIDP -- chronic inflammatory demyelinating polyneuropathy -- is characterized by symmetrical nerve damage in both legs, both feet, both arms, both hands. CIDP is rare and often misdiagnosed. It is considered an autoimmune disease and is treated with immune system modulators, primarily IVIG (regular infusions of gammaglobulin). Left untreated, or misdiagnosed and treated only for pain, CIDP can lead to permanent paralysis and a lifetime in a wheelchair. As a CIDP patient, I urge you to bring up the possibility of CIDP with your neurologist if you have symptoms in both legs or both arms or all four at the same time.

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@sparshall
I had heard that CIDP is a rare disease bit it seems like a few people here have mentioned having it recently. Maybe it's becoming more common? Or perhaps just coincidence.

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Mentor
Jim, Volunteer Mentor | @jimhd | Oct 16, 2020
In reply to @sparshall "If your neuropathy affects your legs/feet and arms/hands, make sure you are getting a correct diagnosis...." + (show)
@sparshall

If your neuropathy affects your legs/feet and arms/hands, make sure you are getting a correct diagnosis. CIDP -- chronic inflammatory demyelinating polyneuropathy -- is characterized by symmetrical nerve damage in both legs, both feet, both arms, both hands. CIDP is rare and often misdiagnosed. It is considered an autoimmune disease and is treated with immune system modulators, primarily IVIG (regular infusions of gammaglobulin). Left untreated, or misdiagnosed and treated only for pain, CIDP can lead to permanent paralysis and a lifetime in a wheelchair. As a CIDP patient, I urge you to bring up the possibility of CIDP with your neurologist if you have symptoms in both legs or both arms or all four at the same time.

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@sparshall
All of my symptoms are bilateral. Idiopathic small fiber peripheral polyneuropathy has been the label. Tuesday, when I asked the neurologist about CIDP, he affirmed that it applies to me. We spoke briefly about IVIG infusion, and he said that he'd like to revisit the subject after I have a pain pump in place for the pain in my feet and ankles. I'm hoping that it won't take a long time to have that done. I'm really tired of the unrelenting pain.

The Abbott rep adjusted my scs today, and it seems like my feet are hurting even more. And the battery pack, which is on the left side of my back above the belt line, hurts when I lie on my back, or sit with my back against a chair back. I've been losing weight, so it is quite prominent. If I don't decide to get rid of it entirely, I'm thinking about having it moved to my buttocks, where there's a little more cushioning. So many decisions. There's just too much going on here. My anxiety level has been elevated noticeably the past few months, with covid19, hassles with Medicare about prescriptions, non-stop pain and so many things I'm dealing with. When anxiety level goes up, depression increases, and add to that the neuropathy pain...it's becoming overwhelming.

Neuropathy pain has always been present in both feet, and numbness and tingling are bilateral, as well. Numbness in my fingertips is present in both hands. Diplopia involves both eyes. If I had 2 esophaguses, I'd have dysmotility in both. At least no one can accuse me of not having balance in my life.

Jim

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3 replies
Hank | @jesfactsmon | Oct 16, 2020
In reply to @jimhd "@sparshall All of my symptoms are bilateral. Idiopathic small fiber peripheral polyneuropathy has been the label...." + (show)
@jimhd

@sparshall
All of my symptoms are bilateral. Idiopathic small fiber peripheral polyneuropathy has been the label. Tuesday, when I asked the neurologist about CIDP, he affirmed that it applies to me. We spoke briefly about IVIG infusion, and he said that he'd like to revisit the subject after I have a pain pump in place for the pain in my feet and ankles. I'm hoping that it won't take a long time to have that done. I'm really tired of the unrelenting pain.

The Abbott rep adjusted my scs today, and it seems like my feet are hurting even more. And the battery pack, which is on the left side of my back above the belt line, hurts when I lie on my back, or sit with my back against a chair back. I've been losing weight, so it is quite prominent. If I don't decide to get rid of it entirely, I'm thinking about having it moved to my buttocks, where there's a little more cushioning. So many decisions. There's just too much going on here. My anxiety level has been elevated noticeably the past few months, with covid19, hassles with Medicare about prescriptions, non-stop pain and so many things I'm dealing with. When anxiety level goes up, depression increases, and add to that the neuropathy pain...it's becoming overwhelming.

Neuropathy pain has always been present in both feet, and numbness and tingling are bilateral, as well. Numbness in my fingertips is present in both hands. Diplopia involves both eyes. If I had 2 esophaguses, I'd have dysmotility in both. At least no one can accuse me of not having balance in my life.

Jim

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@jimhd I just sent you a PM. Please read. Hank

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lorirenee1 | @lorirenee1 | Oct 16, 2020
In reply to @jimhd "@sparshall All of my symptoms are bilateral. Idiopathic small fiber peripheral polyneuropathy has been the label...." + (show)
@jimhd

@sparshall
All of my symptoms are bilateral. Idiopathic small fiber peripheral polyneuropathy has been the label. Tuesday, when I asked the neurologist about CIDP, he affirmed that it applies to me. We spoke briefly about IVIG infusion, and he said that he'd like to revisit the subject after I have a pain pump in place for the pain in my feet and ankles. I'm hoping that it won't take a long time to have that done. I'm really tired of the unrelenting pain.

The Abbott rep adjusted my scs today, and it seems like my feet are hurting even more. And the battery pack, which is on the left side of my back above the belt line, hurts when I lie on my back, or sit with my back against a chair back. I've been losing weight, so it is quite prominent. If I don't decide to get rid of it entirely, I'm thinking about having it moved to my buttocks, where there's a little more cushioning. So many decisions. There's just too much going on here. My anxiety level has been elevated noticeably the past few months, with covid19, hassles with Medicare about prescriptions, non-stop pain and so many things I'm dealing with. When anxiety level goes up, depression increases, and add to that the neuropathy pain...it's becoming overwhelming.

Neuropathy pain has always been present in both feet, and numbness and tingling are bilateral, as well. Numbness in my fingertips is present in both hands. Diplopia involves both eyes. If I had 2 esophaguses, I'd have dysmotility in both. At least no one can accuse me of not having balance in my life.

Jim

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@jimhd Hi Jim, I am so concerned about you. I hope my input is helpful! First, if you do have CIDP, it sounds like the IVIG therapy is imperative. The follow through in knowing you have it is crucial in getting this proper treatment. I actually never heard of it before, but reading all these posts about it, it does sound like you have it. I am also wondering if things to boost immunity may be helpful for you. You might want to research Bone Broth to boost immunity. It is best taken with Vitamin C. You mix Bone Broth powder in juice. Other high antioxidants to boost immunity are pomegranate and turmeric with black pepper. There are so many more, but perhaps, CIDP research for the healthy things you can do to boost your immune system may help. Second, it sounds like your scs electricity is adjusted too high, if the pain is even worse. If you can turn it down a notch, it might help. Turn down just one "notch" at a time, and see what happens to your pain level. Give it a few days at least, to see if there is improvement. I know I get perhaps about 20-25% pain improvement with the DRG (barely enough to really notice), but I have had vibrations in my legs and glutes when electricity was too high. Terrible feeling. And too high electricity also made my Neuropathy foot pain worse. As far as the battery pack hurting you, if the machine is not helping you at all, maybe just remove the battery pack, period. Then, at least, you will not have an added thing to hurt you. My battery pack is below my waist, and so does not interfere with leaning back. However, sometimes I move in just a perfect position to feel it, and it does not feel good. On a good note, you do not have 2 esophaguses!!! (How do you spell that?!@#!) You do, however, have a very good sense of humor. You might think I am nuts, but sometimes, when I am in terrible pain, I go to youtube and listen to comedians like Don Rickles, Henny Youngman, Chris Rock, etc. I also am like you, and will wash my floors, in terrible pain, and it helps!!! Our brains are rather dumb, and can't deal with too much input at once. If I find intense "other" input, besides pain, it does help. My best to you. I am worried about you. Lori

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helennicola | @helennicola | Oct 16, 2020
In reply to @jimhd "@sparshall All of my symptoms are bilateral. Idiopathic small fiber peripheral polyneuropathy has been the label...." + (show)
@jimhd

@sparshall
All of my symptoms are bilateral. Idiopathic small fiber peripheral polyneuropathy has been the label. Tuesday, when I asked the neurologist about CIDP, he affirmed that it applies to me. We spoke briefly about IVIG infusion, and he said that he'd like to revisit the subject after I have a pain pump in place for the pain in my feet and ankles. I'm hoping that it won't take a long time to have that done. I'm really tired of the unrelenting pain.

The Abbott rep adjusted my scs today, and it seems like my feet are hurting even more. And the battery pack, which is on the left side of my back above the belt line, hurts when I lie on my back, or sit with my back against a chair back. I've been losing weight, so it is quite prominent. If I don't decide to get rid of it entirely, I'm thinking about having it moved to my buttocks, where there's a little more cushioning. So many decisions. There's just too much going on here. My anxiety level has been elevated noticeably the past few months, with covid19, hassles with Medicare about prescriptions, non-stop pain and so many things I'm dealing with. When anxiety level goes up, depression increases, and add to that the neuropathy pain...it's becoming overwhelming.

Neuropathy pain has always been present in both feet, and numbness and tingling are bilateral, as well. Numbness in my fingertips is present in both hands. Diplopia involves both eyes. If I had 2 esophaguses, I'd have dysmotility in both. At least no one can accuse me of not having balance in my life.

Jim

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Hi Jim, did you see my previous post about Belbuca? I was wondering if you or anyone else has heard about it or tried it for pain. Helen

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