1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

sunnyflower | @sunnyflower | Feb 19, 2021
In reply to @jakedduck1 "@avmcbellar I was concerned about Diabetes, cholesterol & blood pressure so I lost 90 pounds. Weighed..." + (show)
@jakedduck1

@avmcbellar
I was concerned about Diabetes, cholesterol & blood pressure so I lost 90 pounds. Weighed 227 and went down to 134 but gained a few pounds. Everyone thought I was sick or we're asking if I had cancer. However, I ate candy or some type of goodies every day. I bought me a 5 pound Hershey chocolate bar to celebrate with when I reached my 90 pound goal. I thought for sure I’d eat it but I still have it. Of course I have more than enough candy cookies pies pastries and junk spread around so no emergency. Someone just sent me a box of fudge today for my birthday and it sure is GOOD!!!
Take care,
Jake

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Happiest belated birthday Jake! 🎂🎁 may I ask how you lost your weight? Can you tell me what you ate and how much of it, maybe an example of a couple of days and nights. I asked because I intentionally lost 200 lb but it was really the fifth time I've lost a great chunk of weight but this is the only time I have kept it off for three years. It was brutal deprivation, very low calories. How long have you kept this weight off? You sound like me in your love of sweets! I wish you many blessings and a very safe and happy coming year. I just turned 68 on the 8th of February. It's really sounding so close to 70! Warmest m regards, Sunny flower 😊

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3 replies
bustrbrwn22 | @bustrbrwn22 | Feb 19, 2021
In reply to @jakedduck1 "@bustrbrwn22 Good Morning, I wonder if you had Stevens Johnson Syndrome a rare side effect of..." + (show)
@jakedduck1

@bustrbrwn22
Good Morning,
I wonder if you had Stevens Johnson Syndrome a rare side effect of Lactimal and other Anti-convulsants.
if by chance you are of Asian dissent it would be a good idea since you had this reaction to be tested before you’re put on any medication that could cause Steven Johnson syndrome which can be life-threatening.
Jake

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@jakeduck1 Thanks for thinking about this. I just assumed I was a whiney, weak person - this was one of the last medications my psychiatrist had in his arsenal to try and help my refractory depression/anxiety. I will research this. @faithwalker007

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2 replies
bustrbrwn22 | @bustrbrwn22 | Feb 19, 2021
In reply to @bustrbrwn22 "@jakedduck1 @sunnyflower i feel very strongly about lamictal/lamotrigine. While on it I first developed a rash,..." + (show)
@bustrbrwn22

@jakedduck1 @sunnyflower i feel very strongly about lamictal/lamotrigine. While on it I first developed a rash, next time blisters started appearing on my neck and the ER doc wat bed as they spread rapidly down my arms and torso. He showed me a pic on his cell
And said it was flesh eating bacteria nothing he could do pumped me full
Of Benadryl and sent me home 8 hours later. Then the seizures started and my psychiatrist still said to stay on my lamictal. After one seizure I had to crawl like a snake to get around my house and laid on the door jamb to let my dog pea. After a week no exaggeration I could finally recite the alphabet and read some words. It took many weeks to learn to read again. I simply lost knowledge of some letters of the alphabet and couldn’t sound out words. I then started flopping on the floor seizures with still having to crawl like a snake that lasted for days. I stopped
The lamictal and have been seizure free for 3 years as of April 2021. My psychiatrist never agreed with me.

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I so apologize for all my typos on this one guys. Obviously, these seizures, etc. scared the poo out of me and I typed in a state when I had too much emotion.

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bustrbrwn22 | @bustrbrwn22 | Feb 19, 2021
In reply to @jakedduck1 "@avmcbellar I was concerned about Diabetes, cholesterol & blood pressure so I lost 90 pounds. Weighed..." + (show)
@jakedduck1

@avmcbellar
I was concerned about Diabetes, cholesterol & blood pressure so I lost 90 pounds. Weighed 227 and went down to 134 but gained a few pounds. Everyone thought I was sick or we're asking if I had cancer. However, I ate candy or some type of goodies every day. I bought me a 5 pound Hershey chocolate bar to celebrate with when I reached my 90 pound goal. I thought for sure I’d eat it but I still have it. Of course I have more than enough candy cookies pies pastries and junk spread around so no emergency. Someone just sent me a box of fudge today for my birthday and it sure is GOOD!!!
Take care,
Jake

Jump to this post

@jakedduck1 I love my chocolate but not I hear i should not be eating any because of my neuropathy. Oh geeze.

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2 replies
sunnyflower | @sunnyflower | Feb 19, 2021
In reply to @bustrbrwn22 "@jakeduck1 Thanks for thinking about this. I just assumed I was a whiney, weak person -..." + (show)
@bustrbrwn22

@jakeduck1 Thanks for thinking about this. I just assumed I was a whiney, weak person - this was one of the last medications my psychiatrist had in his arsenal to try and help my refractory depression/anxiety. I will research this. @faithwalker007

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Bustrbrwn, you are not a whiny, weak person so take that back! You are a beautiful, worthy human being! Just saying..... 🤗❤️🙏

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1 reply
artist01 | @artist01 | Feb 19, 2021
In reply to @avmcbellar "No worries, Laurie. You should still be able to make shakes using foods that are low..." + (show)
@avmcbellar

No worries, Laurie. You should still be able to make shakes using foods that are low in fiber. How about the fruits and vegetables you can tolerate. Can those be used to make your shakes? Banana and apple should be OK. Veggies should be cooked not raw. Besides the plant based milks there are dairy milks available without lactose for those who are lactose intolerant. Is your GI sensitive to the plant based milks? I prefer using dairy milk without the lactose with my oatmeal to keep the carb count down. You would think the senior centers to have different diets available to please their residents. There are so many needs. How about ready made shakes? I get the diabetic shakes for my mother. I have noticed there are also mixes available for smoothies at the grocery stores. Maybe there is one for you. Some contain vitamins as well. Don’t give up. Look into the possibilities. The mixes can be used with a blender or a bullet. A suggestion would be to check the Amazon website to see what is out there.

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@avmcbellar Thankyou SO much for your informative reply. Yes, you sure would expect seniors' rez's to cater to the needs of us old folks, but that's the nature of the beast, here. It's a great place, and the meals are excellent, but I can't eat them! (still looking for that pony!)
During dinner this evening I was talking about all this with my friend, and she is giving me a brand new Bullet that she's never used! I found the pony!! 😆
I'll check out Amazon for the smoothie mixes and, also, maybe I can find frozen food that's been cooked. Maybe not though?
I do use lactose free dairy milk for my cereal and coffee with no problem 😊.
I can't get to a store to shop but have just discovered Amazon and learning how to order, with not too much difficulty. Makes me feel like Thoroughly Modern Millie.
Thanks again

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2 replies
bustrbrwn22 | @bustrbrwn22 | Feb 19, 2021
In reply to @faithwalker007 "Why would a doctor tell you to stay on lamictal with the rash? Were you taking..." + (show)
@faithwalker007

Why would a doctor tell you to stay on lamictal with the rash? Were you taking it to control seizures or neuropathy? Sorry, I’m behind the 8 ball here. Help!

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@faithwalker007 that is a darned good question. The psychiatrist let me know he had exhausted all medications for my refractory depression/anxiety and this was the last option. Maybe he thought I was exaggerating? If you knew me, you'd know I just do not do that and that was the only time I have ever paged a doctor in my life - and I never have again.

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1 reply
artist01 | @artist01 | Feb 19, 2021
In reply to @sunnyflower "Happiest belated birthday Jake! 🎂🎁 may I ask how you lost your weight? Can you tell..." + (show)
@sunnyflower

Happiest belated birthday Jake! 🎂🎁 may I ask how you lost your weight? Can you tell me what you ate and how much of it, maybe an example of a couple of days and nights. I asked because I intentionally lost 200 lb but it was really the fifth time I've lost a great chunk of weight but this is the only time I have kept it off for three years. It was brutal deprivation, very low calories. How long have you kept this weight off? You sound like me in your love of sweets! I wish you many blessings and a very safe and happy coming year. I just turned 68 on the 8th of February. It's really sounding so close to 70! Warmest m regards, Sunny flower 😊

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Happy belated birthday, @sunnyflower, and you're just a kid too, at 68. The best is yet to come. Big congrats on losing 200 lbs. Wow!!

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1 reply
bustrbrwn22 | @bustrbrwn22 | Feb 19, 2021
In reply to @faithwalker007 "I can relate to that. I can barely stand for two minutes. I can’t sit, lie..." + (show)
@faithwalker007

I can relate to that. I can barely stand for two minutes. I can’t sit, lie down, or walk. My dog is the one who gives things for me. I have a cane, walker, and scooter. I have a chair I sleep in. All I want is to have one day without pain and am still dreaming about it happening.
I’ll wait for it or not but either way, I’ll survive.

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@faithwalker007 I am so sorry about what you have to suffer through Renee. I don't know how you do it.

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1 reply
Leonard | @jakedduck1 | Feb 19, 2021
In reply to @sunnyflower "Happiest belated birthday Jake! 🎂🎁 may I ask how you lost your weight? Can you tell..." + (show)
@sunnyflower

Happiest belated birthday Jake! 🎂🎁 may I ask how you lost your weight? Can you tell me what you ate and how much of it, maybe an example of a couple of days and nights. I asked because I intentionally lost 200 lb but it was really the fifth time I've lost a great chunk of weight but this is the only time I have kept it off for three years. It was brutal deprivation, very low calories. How long have you kept this weight off? You sound like me in your love of sweets! I wish you many blessings and a very safe and happy coming year. I just turned 68 on the 8th of February. It's really sounding so close to 70! Warmest m regards, Sunny flower 😊

Jump to this post

@sunnyflower
I don’t remember exactly what meals I had but I stopped all soft drinks ice cream. Haven't had donuts in 3 years. No frozen meals or any packaged foods & no fast foods and only went to restaurant on my birthday except when my friend brought me something which wasn't often. Very few canned foods, beans for salad, tomato sauce (when the girl cooks for me she uses fresh tomatoes) garbanzo's can't think of what else. Had fresh whole foods that had to be cooked. Had beans & lentils (because of iron content) & salads. Lots of veggies. Of course I didn't give up any of the 5 most important food groups, Candies cookies cakes pies and pastry but did cut back on sweets, that was the hardest part. I try to get plenty of iron since I donate blood products 2 and sometimes 3 times a month. But I decided to eat right except for candy and not to gain weight again. My doctor said I had to go to the gym and her office called every week To make sure I had been there every day. I was also ordered to see a nutritionist. She wanted me to have 1 strand of spaghetti and call it a meal. Looks like I'm getting a roommate, a guy who loves to cook. He must be as crazy as Florida Mary's (@imallears) son.
congratulations on your weight loss that’s quite an accomplishment. 90 pounds is the most I’ve ever lost at one time, one long drawn out time that is. 2 years I think it took.
Take care,
Jake

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