PN: From Anger to Acceptance

@jakedduck1 Jake, interesting point. Was on phenobarb and dilantin from 1972 to about 1979. Then in 1979, phenobarb eliminated. Since 1979 been on 600 mg. of 'dilantin daily which has held me well, levels around 8 - 10 and I've tolerated it well. I have raised same question since my dx. in 2015 and all neuro docs said likely not. If dilantin was the cause, docs feel neuropathy would not have waited 35 - 40 years to show up. Yet, as you know, no doc is going to drop the dilantin if it is working...why take a chance. Perhaps you might be able to answer a question. Some folks have pain related PN and docs will prescribe dilantin for pain. I found that to be a little confusing because yes, dilantin is a known to be a POSSIBLE cause of PN. I have no pain with my PN, only numbness and horrible balance. So, is the dilantin the cause of having no pain with sensory motor PN? When I ask neuro docs, including those at Mayo, they don't know. Something else to add to the mystery. Ed

@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

@njed
Hi Ed,
I never really answered your question about Dilantin treating neuropathy. I don't think the Dilantin is used much anymore for that purpose. Gabapentin and the carbamazepines, Tegratol & Carbatrol are much more common although I don't know anyone who has been on Carbamazepine although I take Carbatrol 1,000 mg a day. It certainly doesn't do anything for numbness, and I no longer have the pains, my condition worsened and the numbness took over because of more dying nerve gibers. I think seizure meds are wicked and it's all I can do to take them. On day I lost control and threw them across my kitchen, but I gathered them up and took them dirt all. Not bad for taking them for 57 years and only losing it once.
Do you ever have seizures anymore? My last round was Aug of 2019. I had 1 at home and 5 in the hospital.
Take care of yourself Ed,
Jake

Ed - Interesting. My Dad was questionable. He developed severe dementia in his early 60’s. One day he woke up and could no longer walk. His wife interpreted his living will to mean don’t do any tests or anything as long as he was comfortable, so he was shipped off to a nursing home to live out his remaining 5 years in bed. The doctors said he “may” have had a minor stroke, but they did no scans. His speech remained unaffected, only his legs were too weak and and PT and dimentia didn’t mesh. We weren’t happy that his wife (and doctor) had decided his dementia made him not worth saving (I’m still disturbed by that). My PN took 10 days from first sign of weakness to wheelchair at almost 52. Since my dementia hasn’t quite kicked in yet, my DNR hasn’t been invoked 😵‍💫

So we can only wonder about my Dad, but no other kin have displayed question marks, though I only had 1 grandparent live to be over 60, and I know little about my family tree above me. So I wonder if John’s Hopkins rules were stricter or if rules have changed? I will say I have to pay $150 for the testing that is not for CMT, so perhaps it’s the insurance rule?

Debbie - just caught what you said. You were fine, no PN. Then, in 10 days you went from initial/first signs of PN to a wheelchair. That is horrible. Was any immediate drug relating testing done? And, were you given any strong antibiotics at that time? Old Ed

Ray, I totally agree with your comment about the pain. I've been told that with my PN, there is no medication to reduce symptoms. In the past, my primary offered to ship me off to PT but then I run across the scenario that if I don't improve in PT, the insurance will not pay. Ok Ed, you need to stand on one foot with eyes closed for 6 seconds. Really, I can't stand on 2 feet with eyes closed for 6 seconds. Yes, frustrating.

I went to my PCP on Day 4, who scheduled a Neuro appointment whose first opening was three months out. On about Day 6, it was a weekend and went to the ER because I noticed blood in urine and I couldn’t walk without assistance. They sent me home awaiting tests, but called me back the next day to be admitted because the cultures came back with a severe UTI/Kidney infection that needed IV and supervised treatment. It was the 2nd day in the hospital that I fell on the bathroom floor and was too weak to get up and landed in the wheelchair for 6 months and extensive PT.

So the antibiotics were AFTER/during the infection. Docs said they didn’t get enough fluid from lumbar puncture but thought GBS was negative. Some Neuros say they think the infection I had was coincidental to the PN (I just find that hard to believe). Duke would later suggest, at a consult 4 months into it, that it “maybe” was a viral or post infection disorder that presents like GBS.
The hospital I was in for 2 weeks (before being transferred to rehab home) was in Myrtle Beach and they didn’t have a neuro department. So the hospital didn’t even have the capability to do EMG there, that came in about 5 weeks. Of course, I had no idea what had hit me and knew little about PN, and as it took over my hands as well at the end of those 10 days, using phone and computer was not an option for quite awhile so I wasn’t in research mode.

"I have no pain with my PN, only numbness and horrible balance."

It's the damnest thing. I've caught myself wishing I had pain––at least a little––to go along with my PN. It seems every time I tell a neurodoc that all I have is numbness and a silly (read: precarious) way of walking, he begins to lose interest. I've grown to accept what appears to be a doc's fading interest as his way of signaling that without pain, he's nothing to suggest, no drug, no therapy, no at-home regimen, absolutely nothing. As you say, Ed, something else to add to the mystery.

I never was concerned about “why me” with my Epilepsy or neuropathy. I always felt it was negative and a way to feel sorry for myself. It's important to come to terms with whatever illness you have and acceptance is part of that, I believe that acceptance is essential. Just speaking about myself.
Take care,
Jake