PN: From Anger to Acceptance

Hi, Debbie

Frankly, it surprised me when this last neurologist offered a comparison between my two EMGs. A comparison hadn't been the reason I'd gone to see him. He was in mid-EMG when he stopped and said, more or less to himself, "Where's that original EMG?" stood, opened the exam room door, and called for it. When he had both EMGs in hand, he said––without my having asked him––"Your PN hasn't progressed much, if at all, in a year's time."

"Idiopathic" is now my favorite word, too. I use it on all possible occasions: dinner parties, supermarket queues, phone chats with my financial advisor. 🙂

Ray

Good OLD Ed (I couldn't pass it up either!), others: I chose "anger" in my lead-off post more or less for the alliteration (with "acceptance"). I could just as easily have said "puzzlement," "disappointment," "alarm," or, for some of us, "sadness." For myself, I never felt "angry." I left my neurodoc's office the day he'd given me my diagnosis, eager to hit the books and learn all I could about this Thing Called PN.
––Ray

@ray666 - Ray - glad to hear that your PN has not progressed much, that is great. Could the EB-N5 contribute towards this? Ed

@njed – Ed, I wish I knew if the EB-N5 is helping. Others ask me, too, and my answer is always the same. I'm prepping for my next neurodoc visit (2/28) and that EB-N5 question is at the top of the list. This is the same fellow who had me do a genetic test (cheek swab); I'm eager to learn the results of that test. (My brother, who died three years ago, had terrible neuropathy, but that's about all I know. At the time, I didn't have any PN symptoms, so I never pressed him for information. Now, of course, my neurodoc is asking.) – Ray

Ray, the fact that your brother had terrible neuropathy would have to be a smoking gun. I have no known family members with PN. That is interesting, and I'd ask if there are any other genetic testing that might be considered. I had CMT testing in 2018 and it came back with no markers. Ed

Good suggestion, Ed. I'll admit I know nothing about genetic testing. Just now, I was listening to a Foundation webinar on genetic testing and hereditary PN. Interesting stuff. And it has me wondering what sort of test was it that I was asked to take and what, if any, I might expect the results to be. Oddly enough, asking to take the test as I was getting ready to go seemed almost an offhand remark on the part of the neurodoc: "Oh, say, Ray, would you mind … " etc. –Ray

@njed
Hi OLD Ed,
Did your doctors ever suggest your seizure medication may have been the cause of your Neuropathy? Dilantin, Phenobarbital, Carbamazepine, Gabapentin, Keppra, Topamax, and Vimpat and others have been associated with potentially causing Neuropathy. Although it's not a common side effect. Doctors believe seizure meds caused my Neuropathy.
Take care,
Jake

@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

"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.

@njed
I’m not convinced the time frame is that important considering the differences between peoples response to medication. I took Dikantin & Phenobarbital along with 3 other seizure meds for 18 or 20 years before Neoprathy was diagnosed. All my meds were associated with potentially causing neuropathy. Dilantin causes axonal shrinkage of the sural nerve, this damage does not appear to improve after discontinuation of the drug. Also Dilantin lowers folate absorbsion and electrophysiological changes within nervous system cells. Does anyone really know the time it can take to subcume to neuropathy and from seizure meds. Like you said in another thread there is no test so I/we will never know for sure but it's a definite possibility. But it is what it is and not going away so I guess it doesn't really matter, like our Epilepsies 😩🤬
Take care OLD buddy,
Jake