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← Return to PN: From Anger to Acceptance
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@njed
“So, is the dilantin the cause of having no pain with sensory motor PN?”
Like your doctors, I can only speculate. I believe the longer these horrible medicines are taken the greater chance of it worsening our neuropathy. We both took the same meds and have neuropathy. I can't scientifically prove Dilantin was the cause but I believe it's reasonable. The sad part is I'll never really know for sure but I started out with neuropathy just on the bottoms of my feet it eventually progressed up to my waist, then caused ED, bowel problems, and urinary problems and leg weakness. I do sometimes wonder if the medication (Carbatrol) is making it progress at a faster pace, although it has been 37 years. When your doctors said they didn't believe it was caused by your seizure meds I don't think their opinion is any more reliable than mine. After all, you, me and the doctors are only surmising. But I believe the evidence is there. Was your Dilantin ever in the toxic range?
Dilantin is a non-linear drug and mine became unstable. No matter how it was taken my level remained toxic. Toxic levels are even more likely to cause neuropathy.
Jake
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@jakedduck1 -- Jake, as you know, there is no test to say ... yes, the Dilantin has caused the PN. My symptoms started the same as yours, bottom of feet and toes then worked upward from there. Mine has stabilized below the knees and lately, in past 3 years, evidence in fingertips. Each of us have different patterns. You are right about the doctors, when I would bring up the possibility of these meds causing PN...oh no....I doubt it..likely not. They really don't know. Oddly enough, thinking back 20 years ago, when I would go to a neuro doc, they would all have me walk across the exam room walking toe to heal checking my balance. That test stopped as PN progressed because of inability to do so. My levels were jumping around for a while, then one doc ordered pure Dilantin and my levels were up around 10. Then, my friends at the insurance company questioned the need for pure Dilantin. My Dilantin was never in toxic range. Ed