Large-fiber neuropathy: Your prescrition meds & supplements?

Posted by Ray Kemble @ray666, Feb 7 12:44pm

Mine – to the best of my understanding – is idiopathic large-fiber PN. Large fiber – again, to the best of my understanding – often (but not always) means balance problems but no or minimal pain. I suspect that those of us with large-fiber PN are in the minority. I'm curious: for others with large-fiber neuropathy, what prescription meds and/or supplements are you taking, and for how long have you been taking them? How would you rate their effectiveness?

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Ray Kemble | @ray666 | Feb 9 4:27pm

In reply to @bjk3 "I laughed out loud, Ray! You sound in good form - I will quit worrying! 😅" + (show)

"Good form" for a guy with PN, maybe. Hardly form enough for Cirque de Soleil. Maybe next year? If I keep taking my meds? (How are you doing, Barb?)

Ray Kemble | @ray666 | Feb 9 4:30pm

In reply to @joanland "Your comment about the naming of meds brought me a chuckle. Thanks. I enjoyed that." + (show)

I'm glad I gave you a chuckle, Joan. I figure a chuckle is worth ten prescription meds any day. 🙂 My very best to you! –Ray

Ray Kemble | @ray666 | Feb 9 4:40pm

Hi, Ed. When you say, "I think we are anxious to try what we think will work … " I hear the same things on the Sepsis Alliance forum. For many, it's beyond anxiety. Its desperation. Panic. I remember my reaction when I first heard my neurologist use that word "incurable." I remember the drive home: splattering rain, bumper-to-bumper traffic, and my mind unable to stop massaging that word "incurable" – maybe I did hear the doctor, right? … maybe he meant "difficult" to cure? … maybe he misread my EMG? … maybe … maybe … maybe. It wasn't until I learned to accept "incurable" for what the word meant that I started to live again. (Life. Tough, some days, to live with it, but I damn sure don't want to live without it.) –Ray

smn1 | @smn1 | Feb 9 4:45pm

So I literally found this the other day. Posted it about 5 minutes ago. But seems relevant here, I'm just starting to try it. Stumbled upon it, so who knows. Don't know if it's been discussed elsewhere. https://calgaryneuropathy.com/31-creatine-and-neuropathy/

bjk3 | @bjk3 | Feb 10 1:22am

In reply to @ray666 ""Good form" for a guy with PN, maybe. Hardly form enough for Cirque de Soleil. Maybe..." + (show)

I'm well, thanks! Don't like taking some of the horse-pill sized supplements but the Rxs are mercifully small. I became a great-grandma in Oct. so I'm over the moon with my new great-grandson who lives in Canada. Cirque de Soleil Ice is performing here in a few weeks. Any chance they will somehow be incorporating Shakespeare soon?

bjk3 | @bjk3 | Feb 10 1:37am

In reply to @smn1 "So I literally found this the other day. Posted it about 5 minutes ago. But seems..." + (show)

It's an interesting article but I get nervous when I see that words are used/misspelled incorrectly. Under #2 "Reducing the Amount of Methyl Drainage" there is a sentence that contains "it drains the bodies methyl stores". It should be "body's". Truly professional/specialist practitioners would not let this kind of oversight go to press. I'd sure want to double-check with the Mayo Clinic to be certain this originated with them. I do appreciate your kindness in offering information that you hope could benefit others.

NJ Ed | @njed | Feb 10 7:16am

In reply to @ray666 "Hi, Ed. When you say, "I think we are anxious to try what we think will..." + (show)

Ray - I agree with your comments. Also, the fact that doctors need to tell a patient that he or she has PN with no cure is as difficult on the doctor as it is for the patient to hear it. When I went to Mayo in MN, the doctor was obviously upset to hand me the news that my PN had no cure. With my wife working in the medical community at our local hospital for 25 years, on the way home from Mayo she reminded me that there are things way worse out there that have no cure. I always keep that in mind. Ed

Ray Kemble | @ray666 | Feb 10 1:49pm

In reply to @njed "Ray - I agree with your comments. Also, the fact that doctors need to tell a..." + (show)

Ed – I'll not forget how, when my neurologist had finished with my EMG, he turned, walked to the window, and stood looking out, his back to me. I thought, 'How odd … ' As I was pulling my jeans on, I was thinking, 'Why isn't he talking to me?' It was only on reflection days later that I realized he was trying to choose his words carefully, not knowing how I might react to the news that I had an incurable disease. – Ray

cats0cats2 | @cats0cats2 | 2 days ago

In reply to @njed "@ray666 In 2020, Mayo gave me a diagnosis of large fiber and small fiber peripheral neuropathy...." + (show)

I have thoracic polyneuropathy, so assume it is large fiber vs. small fiber neuropathy. Have small fiber neuropathy various places (finger, leg etc.) but it is not like the thoracic polyneuropathy that has my thoracic muscles cinched up tight. Have balance issues as a result. I am currently taking B12, Calcium Citrate, Nerve supplement w/ALA, Benfotiamine, D3, Zinc, Flaxseed oil and I can't say that any of them help even a little bit. Any unusual activity always makes the thoracic muscles cinch up tighter. Wondering if there is are any meds in the muscle relaxer group that might release me from my bondage!!!!