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

@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

@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

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

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.

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.

@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

@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

@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