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Foot Neuropathy, CIDP?

Posted by wsgayski123 @wsgayski123, Jan 24 8:15am

I have foot neuropathy that progressed from one foot to the other over 15 yrs. History of alcohol use, and high sugar. Had a soft diagnosis of CIDP. EMS, blood tests, spinal tap inconclusive. Neurologist based his opinion on office exams, which were very subjective. Had 1.5 yrs of immune globulin infusions with no effect. Neuropathy got worse with burning after knee replacement. Thinking of getting a second opinion. How could the knee surgery affect the neuropathy? I think it’s diabetic neuropathy 🤷‍♂️. Ps. I’ve done life style changes over the last 1.5 years. Lost 50lbs. High protein diet. A1C has been much lower. 6.1

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blowerk1216 | @blowerk1216 | Jan 26 4:50pm

I know the success varies for person to person

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Jim, Volunteer Mentor | @jimhd | Jan 27 11:28pm

@wsgayski123. A diagnosis of CIDP should be more objective than subjective. Tests, often repeated every few months, could provide a better diagnosis. I started with just PN, but as it progressed, the nerve sheath was deteriorating (Demyelinating). None of the usual neuropathy meds helped me. It is generally a progressive disease, and any time a surgery disturbs nerves, neuropathy can be affected. Some days I don't know how much longer I can handle the nonstop pain. I try to do as much as I can to take my mind off it.

Jim

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blowerk1216 | @blowerk1216 | Jan 28 3:41pm
In reply to @jimhd "@wsgayski123. A diagnosis of CIDP should be more objective than subjective. Tests, often repeated every few..." + (show)
Profile picture for Jim, Volunteer Mentor @jimhd

@wsgayski123. A diagnosis of CIDP should be more objective than subjective. Tests, often repeated every few months, could provide a better diagnosis. I started with just PN, but as it progressed, the nerve sheath was deteriorating (Demyelinating). None of the usual neuropathy meds helped me. It is generally a progressive disease, and any time a surgery disturbs nerves, neuropathy can be affected. Some days I don't know how much longer I can handle the nonstop pain. I try to do as much as I can to take my mind off it.

Jim

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@jimhd has anyone tried Bio Nerve?

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Jim, Volunteer Mentor | @jimhd | Jan 28 5:26pm
In reply to @blowerk1216 "@jimhd has anyone tried Bio Nerve?" + (show)
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@jimhd has anyone tried Bio Nerve?

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@blowerk1216 I haven't heard of it

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shall3863 | @shall3863 | Jan 28 5:47pm
In reply to @jimhd "@wsgayski123. A diagnosis of CIDP should be more objective than subjective. Tests, often repeated every few..." + (show)
Profile picture for Jim, Volunteer Mentor @jimhd

@wsgayski123. A diagnosis of CIDP should be more objective than subjective. Tests, often repeated every few months, could provide a better diagnosis. I started with just PN, but as it progressed, the nerve sheath was deteriorating (Demyelinating). None of the usual neuropathy meds helped me. It is generally a progressive disease, and any time a surgery disturbs nerves, neuropathy can be affected. Some days I don't know how much longer I can handle the nonstop pain. I try to do as much as I can to take my mind off it.

Jim

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@jimhd Have you ever tried gabapinton?

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Jim, Volunteer Mentor | @jimhd | Jan 28 8:45pm
In reply to @shall3863 "@jimhd Have you ever tried gabapinton?" + (show)
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@jimhd Have you ever tried gabapinton?

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@shall3863 I've tried all the neuropathy meds and dozens more. Nothing has helped .

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greengold | @greengold | Jan 30 11:16am

Good for you making lifestyle changes. I have foot burning, some jabbing pain in my mid calf, and recently weakness in hands especially the rung and small fingers if both hands.
I started on a plant-based-whole-foods way of eating a month ago as I have usually been in the pre-diabetic range of the A1C. I thought a very clean sugar, salt and oil free diet may help. A bit too soon to know, but I eat a LOT, and still lost a few pounds.

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