@davidmoll
My 40 year battle with neuropathy most likely was caused by years of toxic effects of seizure medications. But as @njed once wisely pointed out I will never know for sure. It just seems the most likely cause. My neuropathy did progress and is considered permanent now at
stage 4. Neuropathy may stabilize or even improve.
Although my neuropathy was stable for probably 30 years it did progress to stage 4. Thats when my pain disappeared, replaced by numbness. So as far as I'm concerned, even though the progression brought on ED, bowel and bladder complications at least the horrendous pain is gone. For me, the issues from progression are easier to deal with than the pain was. I try and look at any potential progression in a positive way. Maybe it will improve more even though the doctors say otherwise. Doctors arent clairvoyant but I've had some who thought they were.
Take care,
Jake
@arcuri24 I think the non-diabetic group of us with PN is substantial. In 2019, I was so convinced that my PN was related to lower back issues, I was able to schedule an appointment with Mayo in MN. After spending several days of thorough testing, the cause of my PN is unknown. Yet, all my symptoms point towards having diabetes that every doctor I've been to all ask me several times if I'm a diabetic. My blood work is normal. Mayo could not give me any definitive cause. I know what I have but not the why. After chasing the why down the rabbit hole for years, I finally decided to concentrate on how to live with PN. You are right, PN is a life changing experience and for me, acceptance and learning to live with it, making necessary adjustments along the way is important. Be safe and best to you going forward. Ed
Like you my blood work was normal and I, too, once thought that I was diabetic. Since my brother was diagnosed with RA, I thought perhaps, my PN was due to an RA marker. I think you made the right decision in stating that you will try to live with PN. I must do the same as the doctors seem to only want to give me drugs like zoloft or gabapentin and their lack of a bedside manner only causes stress. Far from giving up, I, too, will in your words, make "necessary adjustment"--and some will be for better living--so I thank you for your kind, sympathetic words. Let us keep hope alive for an eventual cure!!
@bigjohnscho
I took
1. Dilantin
2. Phenobarbital
3. Mysoline
4. Depacote
5. Zarontin
Zarontin isn't believed to cause neuropathy? The other four have the potential to.
The doctors feel it was primarily the Dilantin & Phenobarbital. Perhaps taking so many together had something to do with it.
Take care,
Jake
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What seizure medication did you use that caused the neuropathy
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1 ReactionLike you my blood work was normal and I, too, once thought that I was diabetic. Since my brother was diagnosed with RA, I thought perhaps, my PN was due to an RA marker. I think you made the right decision in stating that you will try to live with PN. I must do the same as the doctors seem to only want to give me drugs like zoloft or gabapentin and their lack of a bedside manner only causes stress. Far from giving up, I, too, will in your words, make "necessary adjustment"--and some will be for better living--so I thank you for your kind, sympathetic words. Let us keep hope alive for an eventual cure!!
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3 Reactions@bigjohnscho
I took
1. Dilantin
2. Phenobarbital
3. Mysoline
4. Depacote
5. Zarontin
Zarontin isn't believed to cause neuropathy? The other four have the potential to.
The doctors feel it was primarily the Dilantin & Phenobarbital. Perhaps taking so many together had something to do with it.
Take care,
Jake
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Helpful -
Hug
1 Reaction