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@njed

@ray666 Ray, all doing very well on our end. So, why was the EB-N5 suggested by your neurologist? Having similar symptoms and the fact that you are still taking it, has it helped you in any way or is the jury still out? I know that you've been taking it for quite some time. Ed

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Replies to "@ray666 Ray, all doing very well on our end. So, why was the EB-N5 suggested by..."

Good morning, Ed (@njed) Your saying “all doing well on our end” sounds like the best possible news. I’m happy to hear that. As for your EB-N5 question, this is the perfect time for me to double-check the dates and reasons since I’m about to meet with a new neurologist, and he’s bound to ask me about my history with EB-N5. I was prescribed EB-N5 by Dr. B. (I’ll call him Dr. B.) in 2023 and took my first capsules (two a day) on July 3. That means I’ve been taking EB-N5 now for six-and-a-half months. At the time Dr. B. suggested EB-N5, I knew nothing about the possibility of B6 toxicity. It was only after I posted on Connect that folks alerted me to the dangers of toxicity. I called and spoke to Dr. B., and he explained that there are two strains of B6: pyridoxine hydrochloride, which can lead to toxicity, and pyridoxal-5-phosphate (P5P), which cannot (or at least should not). EB-N5 contains only P5P, so I shouldn’t be alarmed. More recently, Dr. W.’s nurse (my new neurologist, I’ll call Dr. W.) said this to me. It’s Dr. W. who’ll be giving me a new EMG on January 26, after which I’ll be reviewing with him everything about my PN, including my taking EB-N5. As far as symptoms go (Has EB-N5 helped, hindered, or there’s not much to report?), I’m not sure what to say. My balance is still wonky, wonkier at times than others. I’ve not fallen (thanks to my Ph.D. in proprioception 🙂 ). I still have no pain. I’ll talk with Dr. W. with as open a mind as possible. Ed, I apologize for such a lengthy reply to your question, but it’s been good for me to review all this before meeting Dr. W. Again, the best news possible is hearing that you and your wife are doing well! –Ray