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Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

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oldkarl | @oldkarl | Oct 31, 2017
In reply to @mfobrien36 "Hi old karl and john - Please don't count on the "jelly" variety of calcium to..." + (show)
Profile picture for Mary @mfobrien36

Hi old karl and john - Please don't count on the "jelly" variety of calcium to be less of a constipation-er (medical term)! I looked for a long time to find a tasty calcium jelly that would be both candy and good for me. I experienced the constipation almost immediately. My mother, on the other hand (she died at nearly 102) took the regular old whopping big calcium pills most of her life and never had a problem with it. This tells me it may be an individual thing but she usually had a cup of strong coffee in the morning and had to stop that 'cause it gave her the "trots" - so who knows? Might try several different permutations of the calcium &/or coffee.... hmmmm?

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Walmart has the same thing by another name which I have forgotten, but is half the price of Miralax.

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Jim, Volunteer Mentor | @jimhd | Oct 31, 2017
In reply to @mfobrien36 "Hi old karl and john - Please don't count on the "jelly" variety of calcium to..." + (show)
Profile picture for Mary @mfobrien36

Hi old karl and john - Please don't count on the "jelly" variety of calcium to be less of a constipation-er (medical term)! I looked for a long time to find a tasty calcium jelly that would be both candy and good for me. I experienced the constipation almost immediately. My mother, on the other hand (she died at nearly 102) took the regular old whopping big calcium pills most of her life and never had a problem with it. This tells me it may be an individual thing but she usually had a cup of strong coffee in the morning and had to stop that 'cause it gave her the "trots" - so who knows? Might try several different permutations of the calcium &/or coffee.... hmmmm?

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@johnbishop - thanks for the links. I use a generic called Generlac. It's a sweet syrup that I think tastes pretty good, though I do find that eating a chocolate chip cookie first (or something else chocolate) makes it taste even better. But everything is better with chocolate, in my opinion.

Jim

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John, Volunteer Mentor | @johnbishop | Oct 31, 2017
In reply to @mfobrien36 "Hi old karl and john - Please don't count on the "jelly" variety of calcium to..." + (show)
Profile picture for Mary @mfobrien36

Hi old karl and john - Please don't count on the "jelly" variety of calcium to be less of a constipation-er (medical term)! I looked for a long time to find a tasty calcium jelly that would be both candy and good for me. I experienced the constipation almost immediately. My mother, on the other hand (she died at nearly 102) took the regular old whopping big calcium pills most of her life and never had a problem with it. This tells me it may be an individual thing but she usually had a cup of strong coffee in the morning and had to stop that 'cause it gave her the "trots" - so who knows? Might try several different permutations of the calcium &/or coffee.... hmmmm?

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Yes it does...taste better with chocolate!

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Teresa, Volunteer Mentor | @hopeful33250 | Nov 1, 2017
In reply to @mfobrien36 "Hi old karl and john - Please don't count on the "jelly" variety of calcium to..." + (show)
Profile picture for Mary @mfobrien36

Hi old karl and john - Please don't count on the "jelly" variety of calcium to be less of a constipation-er (medical term)! I looked for a long time to find a tasty calcium jelly that would be both candy and good for me. I experienced the constipation almost immediately. My mother, on the other hand (she died at nearly 102) took the regular old whopping big calcium pills most of her life and never had a problem with it. This tells me it may be an individual thing but she usually had a cup of strong coffee in the morning and had to stop that 'cause it gave her the "trots" - so who knows? Might try several different permutations of the calcium &/or coffee.... hmmmm?

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@jimhd and @johnbishop

I still can't understand why chocolate isn't considered one of the food groups!

Teresa

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John, Volunteer Mentor | @johnbishop | Nov 1, 2017
In reply to @mfobrien36 "Hi old karl and john - Please don't count on the "jelly" variety of calcium to..." + (show)
Profile picture for Mary @mfobrien36

Hi old karl and john - Please don't count on the "jelly" variety of calcium to be less of a constipation-er (medical term)! I looked for a long time to find a tasty calcium jelly that would be both candy and good for me. I experienced the constipation almost immediately. My mother, on the other hand (she died at nearly 102) took the regular old whopping big calcium pills most of her life and never had a problem with it. This tells me it may be an individual thing but she usually had a cup of strong coffee in the morning and had to stop that 'cause it gave her the "trots" - so who knows? Might try several different permutations of the calcium &/or coffee.... hmmmm?

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☺They haven't been converted yet. I mean after all - "Life is a box of chocolates..."

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Mary | @mfobrien36 | Nov 1, 2017

A number of years ago, my cat had the same trouble and $1500 later, was put on a prescription called Latchulose (sp?) My experience with this product is that it is by prescription only - even for humans as my friend also had it prescribed and we had a good laugh over that when I accused him of stealing my cat's meds. I think you can also get Miralax from Costco through Amazon and that doesn't require a prescription - this is the generic brand of Miralax. It comes in a triple pack and is considerable cheaper than Miralax. Do I know my laxatives or not!

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Jim, Volunteer Mentor | @jimhd | Nov 2, 2017
In reply to @mfobrien36 "Hi old karl and john - Please don't count on the "jelly" variety of calcium to..." + (show)
Profile picture for Mary @mfobrien36

Hi old karl and john - Please don't count on the "jelly" variety of calcium to be less of a constipation-er (medical term)! I looked for a long time to find a tasty calcium jelly that would be both candy and good for me. I experienced the constipation almost immediately. My mother, on the other hand (she died at nearly 102) took the regular old whopping big calcium pills most of her life and never had a problem with it. This tells me it may be an individual thing but she usually had a cup of strong coffee in the morning and had to stop that 'cause it gave her the "trots" - so who knows? Might try several different permutations of the calcium &/or coffee.... hmmmm?

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@johnbishop - I live on a very low, fixed income, so that leads me to get the prescription form of meds, even if it's available OTC, because it's less out of pocket cost for me. I know that I'd get a lot of criticism for doing that, but budget drives a lot of decisions. Anyway, I don't pay much for the generlac prescription,with Medicare and a supplemental insurance.

Jim

REPLY
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Mary | @mfobrien36 | Nov 2, 2017
In reply to @mfobrien36 "Hi old karl and john - Please don't count on the "jelly" variety of calcium to..." + (show)
Profile picture for Mary @mfobrien36

Hi old karl and john - Please don't count on the "jelly" variety of calcium to be less of a constipation-er (medical term)! I looked for a long time to find a tasty calcium jelly that would be both candy and good for me. I experienced the constipation almost immediately. My mother, on the other hand (she died at nearly 102) took the regular old whopping big calcium pills most of her life and never had a problem with it. This tells me it may be an individual thing but she usually had a cup of strong coffee in the morning and had to stop that 'cause it gave her the "trots" - so who knows? Might try several different permutations of the calcium &/or coffee.... hmmmm?

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Me too and I think you're doing it the right way!

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jersey | @jersey | Dec 1, 2017
In reply to @aliskahan "Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who..." + (show)
Profile picture for Ali Skahan @aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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I have chemo neuropathy, could you give me the name of the supplements your friends on Facebook. Used.

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John, Volunteer Mentor | @johnbishop | Dec 1, 2017
In reply to @aliskahan "Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who..." + (show)
Profile picture for Ali Skahan @aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

Jump to this post

Hi @jersey, I wasn't sure who you meant for your message but if it was me - I use the vitamins and supplements listed here:
http://solutions2pnpd.com/
They do have their 501c3 status. I don't know whether it will work for you but I can share how it's helped me. If you join their closed group you can read the success stories they've had. My small fiber peripheral neuropathy has been going on for over 20 years before I finally sought out a diagnosis in the spring of 2016. I only have numbness with my PN and when I started taking the vitamins and supplements in September 2016 the numbness was in both legs to just below the knees. By December the numbness was down some to just above the ankles - it's subjective on my part though. I haven't seen any additional improvements since then and I'm still taking the protocol of supplements because it may not make the numbness go away totally but does seem to have stopped it's progress which is what my neurologist told me was going to happen. It would keep getting worse until it affect the autonomic nervous system (I think is what he said).

Whatever you decide, I would recommend reading through all the discussions and material they have and it's a lot. Then would discuss it with your doctor.

John

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