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Peripheral neuropathy, RLS and PLMD

Neuropathy | Last Active: May 9, 2023 | Replies (40)

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@jakedduck1

Hi Barbarn,
Do the drugs help you at all. I’m on only 900mg of gabapentin which is no help. I use to take the max dose of 1800mg a day for pain but due to seizures I ended up taking the seizure max of 3600mg still no relief. I’ve never gotten any relief. Since I have taken Phenobarbital long term I’m wondering if my feet have soft tissue damage. My Neuropathy goes from my feet up to my waist. Anyone in the same situation??

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Replies to "Hi Barbarn, Do the drugs help you at all. I’m on only 900mg of gabapentin which..."

Even with dealing with seizures, there still is medicine for you.. not only in pill form. They have a machine that slowly raises and lowers the legs to really help some folks but there are at least 4 really, really good meds out there and one of the drugs is called pramapexole or the name brand would be mirapex. You can start with such a small little bit, Ive known people to just munch a tiny sliver of the pill and have that work. Also Requip... those are the drugs that help transport the dopamine from the brain down into the spine so it can be used to relax those legs. That's the main problem, our brains have plenty of dopamine, it just doesn't make it where it needs to go to work for us. Gabbapentin can pull double duty but it's a little less effective with RLS than some of the newer drugs. My max was 2700mg and I met some people that did 3400 but they didn't feel very well. You MUST follow your doctors orders. Gaba's powers are too great for a friend to advise you.. it's good stuff for painful neuropathy.

I just want to comment here that perhaps you have more than neuropathy alone going on. You may have some muscle atrophy, there are also tendons and all kinds of things that can go wrong in the feet. I too have neuropathy at least to the waist and beyond, perhaps to the neck? There's a giant spot in my back that has no feeling and it extends to the shoulder blade. Mine was a rapid progressing neuropathy and it is more pronounced if edema is present.

Hey Mr. Fudd,
You sound like your in a bad way. I have been taking Neurontin or Gabapentin on and off for over 40 years primarily for seizures at the max dose of 3600mg a day. It didn’t do much if anything for my seizures or Neuropathy. I hope you find some relief Elmer.