New to Neuropathy 2 months.

Posted by grovercleveland @grovercleveland, Jan 19, 2021

November 2-1/2 weeks prescribed Steroid cream for Grovers, Later went for followup. Three complaints (red hands, itchy hands, mild pins and needles. He said I had neuropathy. I asked coincidental after Steroid on skin.
He said age (I am 78..But Ride bike, rolleblade, water ski, work on antique cars ,A1C=5.6, Quite healthy),
till I wore a new dark green Tee Shirt to bed before washing it. In 2 weeks chest broke out in blisters. That is how the story started.
My neuropathy is mild. Like flys stopping here and there on my body. I scratch once or twice and gone. However the land some other place.

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@artist01

Thankyou for your great reply @avmcbellar. I can relate to you so well since I, too, have an AVM. Mine is on the brainstem, (yikes!) so I was once told I am like a walking time bomb. That was 25 years ago. Still rockin' ! You've had the surgery, so that's good. Mine is inoperable, so that's not so good. Lol. I used to obsess about it, but now, it is what it is!
Keep up the great work!

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@artist01
“it is what it is!”
I know what you mean. When I developed Epilepsy at 15 and went into Convulsive Status Epilepticus I was put in an induced coma for 8 months. When I came out of it I had no memories of my life. I had to relearn everything and I do mean EVERYTHING.
When I got home I started having seizures every day sometimes 12 a day. I had a breakdown. I told the psychiatrist “you’re crazier than I am” and walked out and never went back. I decided then, this is what my life is going to be, and for the next 44 years for the most part that's the way it was. Neither I nor the doctors could change it. “It is what it is.” You have no choice but to accept it if you want any joy out of life. Many Epilepsy patients suffer from depression but I wasn't going to be depressed. Besides depression, anxiety & stress can increase seizures. Mine were bad enough.
I think your a courageous lady Laurie and an inspiration for us all. Thank you for all the encouragement you have given us.
Guess I went a bit off track here. Sorry about that.
Take care,
Jake

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@jakedduck1

@artist01
“it is what it is!”
I know what you mean. When I developed Epilepsy at 15 and went into Convulsive Status Epilepticus I was put in an induced coma for 8 months. When I came out of it I had no memories of my life. I had to relearn everything and I do mean EVERYTHING.
When I got home I started having seizures every day sometimes 12 a day. I had a breakdown. I told the psychiatrist “you’re crazier than I am” and walked out and never went back. I decided then, this is what my life is going to be, and for the next 44 years for the most part that's the way it was. Neither I nor the doctors could change it. “It is what it is.” You have no choice but to accept it if you want any joy out of life. Many Epilepsy patients suffer from depression but I wasn't going to be depressed. Besides depression, anxiety & stress can increase seizures. Mine were bad enough.
I think your a courageous lady Laurie and an inspiration for us all. Thank you for all the encouragement you have given us.
Guess I went a bit off track here. Sorry about that.
Take care,
Jake

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#jakedduck1. Thankyou Jake. What a lovely thing to say to me in your last paragraph! Sending you a big hug!!

One of my 3 sons had a malignant brain tumor when he was only 13. He had been having grand mal seizures but the doctors didn't discover the tumor for quite a while. He had surgery and radiation after the surgery and we hoped he would be seizure-free from then on, but that was not the case. He's been on seizure meds ever since, and when he was a young man, he thought he could get away without those meds now and then. He had some very serious seizures and at one point was medi-vacced out of his work camp up north and was in a coma for days. Now, he's been good about taking regular meds, and he's a treasure of a guy. He's the person from whom I got that saying you and I both love - "it is what it is!" Like you, he has a positive outlook on life and someone who gives me support and great joy. You are an inspiration to all of us here, with all the things you have to deal with, and you do it so well!
Warmest wishes for your health, Jake.
Laurie

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@artist01
You and I sound like exceptional people, lol
13 and a brain tumor and malignant too. So your familiar with Status seizures. That must have been difficult as a parent. I've had Status seizures more often than I can count. My parents were called to the hospital many times and told they didn't know if I’d make it through the night. I always felt bad they had to go through that. It still bothers me today. I put them through so much. I went to private school and was chosen to play piano in chapel in my junior year which I was looking forward to but they kicked me out of school in my sophomore year. They had no choice since I was usually on the floor either having a seizure or sleeping or postictal not knowing up from down. What year did your son start having seizures?
Blessings,
Jake

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Hello, Exceptional One. 😆
My son was only about 10 when the seizures started. The doctor said they were not atypical of epilepsy, but didn't have a definitive diagnosis at that point. And yes, it was so very difficult for me as a single parent. OMG. The memories. And Jake, please stop feeling badly over what you think you put your parents through. They loved you, and so it was just "it is what it is" kind of times. Love knows no bounds when it comes to the love a parent has for his or her child. Greg is now 63 years old, the father of two wonderful adult children and grandfather to two more. Happy ending? YES!
That time he was medi-vacced out of a northern camp they didn't know if he'd pull through. I took a redeye bus trip up north to be with him at the northern hospital. You have had a similar experience. We parents just love you all the more when we've gone through that with our beloved child! The bond is that much stronger.
Take care. Laurie ❤

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@HELLO EXTRAORDINARY EXCEPTIONAL one,
“Love knows no bounds when it comes to the love a parent has for his or her child.”
I know what you mean. That's the way I felt about my parents. I helped my Mom take care of my Dad in-between seizures after he was paralyzed from the neck down. 31 years later I took care of my Mom. She wanted to die at home so that's the way it was. It was an honor to care for them.
Take care of your self,
Jake

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@athenalee

It’s all about the enzymes! I have found it fascinating to learn about the metabolism of the meds I need to take now. Up until a year and a half ago when I became ill I hadn’t taken much more than antibiotics, plus herbs and homeopathics. But I quickly learned not to break the Dr.’s rules on my meds when I took two homeopathic tabs for a sinus issue and my liver enzymes shot way up!

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Hi @athenalee it is very interesting to learn how each herb, supplement, or medication can affect the body in either a positive or negative way. Caution should always be taken to not create a chain of undesirable outcomes. I agree research is very important. I believe in moderation and often like to take breaks with certain foods or supplements. Taking medication for a short period only(like an antibiotic) seems to help get your body back in sync (after the medication). For a short time we may have to deal with some of the side effects in order to get the benefits. I am okay with that as long it does not cause permanent harm.

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@jakedduck1

@HELLO EXTRAORDINARY EXCEPTIONAL one,
“Love knows no bounds when it comes to the love a parent has for his or her child.”
I know what you mean. That's the way I felt about my parents. I helped my Mom take care of my Dad in-between seizures after he was paralyzed from the neck down. 31 years later I took care of my Mom. She wanted to die at home so that's the way it was. It was an honor to care for them.
Take care of your self,
Jake

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@jakedduck1, Yes, exactly! Looking after your parents as you did, you more than paid back any perceived debt you felt you had incurred with your own necessity for care. What comes 'round, goes 'round, as the saying goes. I'm full of sayings, aren't I? Lol. Your love for your parents knew no bounds either. May the sun always shine on you, my friend. Laurie

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@avmcbellar

Hi @athenalee it is very interesting to learn how each herb, supplement, or medication can affect the body in either a positive or negative way. Caution should always be taken to not create a chain of undesirable outcomes. I agree research is very important. I believe in moderation and often like to take breaks with certain foods or supplements. Taking medication for a short period only(like an antibiotic) seems to help get your body back in sync (after the medication). For a short time we may have to deal with some of the side effects in order to get the benefits. I am okay with that as long it does not cause permanent harm.

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Yes, I definitely agree. Unfortunately for the first time in my life I will be taking very toxic drugs for the rest of my life. And, these drugs are contributing to the need for yet other drugs...I have to start IVs for osteoporosis now. I have not yet seen a neurologist for my neuropathy, but I hope that I can manage it without more pharmaceuticals. Hopefully I will be able to start reducing the anti rejection meds at some point! Eating healthy and exercising seems to be the best path!

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@athenalee

Yes, I definitely agree. Unfortunately for the first time in my life I will be taking very toxic drugs for the rest of my life. And, these drugs are contributing to the need for yet other drugs...I have to start IVs for osteoporosis now. I have not yet seen a neurologist for my neuropathy, but I hope that I can manage it without more pharmaceuticals. Hopefully I will be able to start reducing the anti rejection meds at some point! Eating healthy and exercising seems to be the best path!

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@athenalee you have nothing to lose with a healthy diet and exercise. Worth a shot!

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@jakedduck1

@HELLO EXTRAORDINARY EXCEPTIONAL one,
“Love knows no bounds when it comes to the love a parent has for his or her child.”
I know what you mean. That's the way I felt about my parents. I helped my Mom take care of my Dad in-between seizures after he was paralyzed from the neck down. 31 years later I took care of my Mom. She wanted to die at home so that's the way it was. It was an honor to care for them.
Take care of your self,
Jake

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What an amazing & loving child your were to BOTH parents. I know you feel good about the loving care you showed for extended years! ( no regrets).
God will truly bless you & you have set a wonderful example for those who love you!

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