Neuropathy and other strange symptoms

Posted by jola65 @jola65, Jun 15, 2019

I’m going to mayo in a few weeks, but I thoughtI’m I would write about my symptoms here to see if anyone has experienced something similar. I have burning and tingling in my arms and legs. It feels like there is an electric shock running through my body at all times. This has been going on for almost 10 years now, and when it began I also developed vertigo and I’m unsure if that has any relation. I have various food sensitivities, trouble sleeping, brain fog, constipation, and tinnitus. These symptoms all started together, and I’m not sure if they’re all related but it seems as though they are. The pain is nonstop, although it has lessened and worsened on and off over time. If anyone has any similar symptoms or any advice please advise!! Thank you for reading.

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

I am Vreadifegary´s mother:
She had to increase her dose of carbamazepine at 2 pills in breackfast, 1 pill in the afternoon and 1 at night. Also she started to take Prednizone 20 mg, 1 pill/5 days. Can she take vitamine D3-5000 iu, mark 21 st Century in a dose of one pill at lunch? She has generalized osteoporosis.
Have a good day and thank you for help my daughter.

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@vradifegari

I am Vreadifegary´s mother:
She had to increase her dose of carbamazepine at 2 pills in breackfast, 1 pill in the afternoon and 1 at night. Also she started to take Prednizone 20 mg, 1 pill/5 days. Can she take vitamine D3-5000 iu, mark 21 st Century in a dose of one pill at lunch? She has generalized osteoporosis.
Have a good day and thank you for help my daughter.

Jump to this post

Hello Vreadifegary´s mother @vradifegari -- I have no medical training or background so I am not able to give advice on taking medications or supplements. I can share my own personal experience. One of the vitamins I take is D3 5000 iu capsules. I take one in the morning and one in the evening along with other supplements. I would check with your daughter's doctor just in case there might be an issue with taking it with her other medications.

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@johnbishop

Hello Vreadifegary´s mother @vradifegari -- I have no medical training or background so I am not able to give advice on taking medications or supplements. I can share my own personal experience. One of the vitamins I take is D3 5000 iu capsules. I take one in the morning and one in the evening along with other supplements. I would check with your daughter's doctor just in case there might be an issue with taking it with her other medications.

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@johnbishop
Hi John,
I’m curious why you take such a large dose of Vit D and what your Vit D level is?
Do you have an illness or multiple conditions and/or medication you take that deplete you Vit D? Did your doctor suggest this dose?
Your post jumped out at me since I’m suffering from a massive kidney stone. Massive doses of Vit D can cause kidney stones and other problems. Do you have your level regularly checked?
Jake

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@jakedduck1

@johnbishop
Hi John,
I’m curious why you take such a large dose of Vit D and what your Vit D level is?
Do you have an illness or multiple conditions and/or medication you take that deplete you Vit D? Did your doctor suggest this dose?
Your post jumped out at me since I’m suffering from a massive kidney stone. Massive doses of Vit D can cause kidney stones and other problems. Do you have your level regularly checked?
Jake

Jump to this post

I know @jakedduck1 that elderly people usually do not get out much into the sunshine so we do not get vit D unless we take it. My doctor prescribed vit D years ago when my vit D tested very low. I am now taking 2000 iu. An iu is really a very small amount. I have never had kidney stones. I will let John answer why his is a little higher.

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@jakedduck1

@johnbishop
Hi John,
I’m curious why you take such a large dose of Vit D and what your Vit D level is?
Do you have an illness or multiple conditions and/or medication you take that deplete you Vit D? Did your doctor suggest this dose?
Your post jumped out at me since I’m suffering from a massive kidney stone. Massive doses of Vit D can cause kidney stones and other problems. Do you have your level regularly checked?
Jake

Jump to this post

Hi Jake @jakedduck1 -- I take the D3 - 5000 IU capsule twice a day as part of my neuropathy supplements I found in the closed Facebook Group Solutions to Peripheral Neuopathy Pain & Discomfort - https://www.facebook.com/groups/SPNPD/. They also have a website (http://solutions2pnpd.com/). The D3 is at a therapeutic dosage level which helps get the usable form into the body. Best description I've found that supports the higher dosage is here:

Driving up the dose: implications for high-dose vitamin d therapy - NCBI
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4824637/

Vitamin D - Doses & Uses
-- https://reference.medscape.com/drug/drisdol-calciferol-vitamind-344417

Dose vitamin D supplementations improve peripheral diabetic neuropathy? A before-after clinical trial.
-- https://www.ncbi.nlm.nih.gov/pubmed/30641826

I get blood labs on a yearly basis as part of my regular checkup.

REPLY
@johnbishop

Hi Jake @jakedduck1 -- I take the D3 - 5000 IU capsule twice a day as part of my neuropathy supplements I found in the closed Facebook Group Solutions to Peripheral Neuopathy Pain & Discomfort - https://www.facebook.com/groups/SPNPD/. They also have a website (http://solutions2pnpd.com/). The D3 is at a therapeutic dosage level which helps get the usable form into the body. Best description I've found that supports the higher dosage is here:

Driving up the dose: implications for high-dose vitamin d therapy - NCBI
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4824637/

Vitamin D - Doses & Uses
-- https://reference.medscape.com/drug/drisdol-calciferol-vitamind-344417

Dose vitamin D supplementations improve peripheral diabetic neuropathy? A before-after clinical trial.
-- https://www.ncbi.nlm.nih.gov/pubmed/30641826

I get blood labs on a yearly basis as part of my regular checkup.

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@johnbishop
Hey John 👋
Do you get much relief from your Neuropathy with the high Vit D Therapy?
Jake

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@jakedduck1

@johnbishop
Hey John 👋
Do you get much relief from your Neuropathy with the high Vit D Therapy?
Jake

Jump to this post

@jakedduck1, The vitamin D is just one of the supplements I take for neuropathy so I can't really quantify how much relief I get from it. When I started taking the supplements back around September 2016 my neuropathy was getting worse in both feet and legs and the neurologist told me it would get worse and I could call back if it did. After taking the supplements for 2 months the progression seemed to have stopped. It hasn't gotten any better and it hasn't gotten any worse so I think it has slowed or stopped the progression. Even though I only have numbness with my small fiber peripheral neuropathy, I think it's a win if I can keep it from getting worse.

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In Reply to Leonard Holloway @jakedduck1:
My name is Gina. I am Vradi´s mom
What else have you tray along your medical treatment? My daughter was once in thermal hidrotherapy sulfur bath (azúfre). She last only 5 days, she had a reaction of strong headache. But of the rest of the body she got one year of relief. Perhaps you should try something like that in the States. I was reading this early the morning:
https://www.google.com.cu/search?q=Stem+cell+therapy+for+neuropathy+pain&hl=es-CU&gbv=2
I really wish you all can feel better.
Maybe in five years or less something is discovered.
Best wishes
Gina

REPLY
@vradifegari

In Reply to Leonard Holloway @jakedduck1:
My name is Gina. I am Vradi´s mom
What else have you tray along your medical treatment? My daughter was once in thermal hidrotherapy sulfur bath (azúfre). She last only 5 days, she had a reaction of strong headache. But of the rest of the body she got one year of relief. Perhaps you should try something like that in the States. I was reading this early the morning:
https://www.google.com.cu/search?q=Stem+cell+therapy+for+neuropathy+pain&hl=es-CU&gbv=2
I really wish you all can feel better.
Maybe in five years or less something is discovered.
Best wishes
Gina

Jump to this post

Thank you

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