Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@johnbishop

About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I’ve come to regret it a little since it’s gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I’m waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it’s associated with pre-diabetes but I’m not buying that diagosis just because I’ve had it for a long time and do not have diabetes. I think it’s related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I’m really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening…praying that you all will find some relief.

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Thank you. I also think my autoimmune disease caused my neuropathy which is what I’m hoping I find out from the neurologist next Month.

Thank you some days are good and some not so good so I take it a day at a time

Keep us updated. Good luck

Thanks worth a try

@johnbishop

About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I’ve come to regret it a little since it’s gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I’m waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it’s associated with pre-diabetes but I’m not buying that diagosis just because I’ve had it for a long time and do not have diabetes. I think it’s related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I’m really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening…praying that you all will find some relief.

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Thanks JOhn that’s why I posted that question to see how others got thei diagnosis and what they are doing for treatment. As we know every one is different bit I
Am willing any suggestion because who knows one of the suggestions
Might work. Can’t go to MN too
Far away but maybe there is someone closer.

@grandma41

Hi,
The essential oil rub is:1 cup coconut oil the solid type10 drops Valor, 10 drop panaway, 10 drops peppermintMix it all together and store it in a glass jar apply it to areas of pain twice a day, you don’t need much at all because it spreads very well and it’ll last a while. You can also use it more than twice a day if you’d like the brand that I have is Young Living but I think any brand would work as long as its 100% pure therapeutic grade essential oils

Sent from Yahoo Mail on Android

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Thanks I’ll try it

@johnbishop

Hi – I’ve had peripheral neuropathy in my feet and now legs for a little over 10 years. I’m probably more fortunate than most since mine is mostly numbness and tingling and no sharp pains. My doctors had me on gabapentin for awhile but it did nothing for me and when I discussed it with a new doctor team I was told gabapentin is only for pain and not numbness. I had to have an ECS and MRI before I could meet with a neurologist. The tests confirmed I have nerve damage but we still don’t know the root cause. I have an appointment for May 2nd with the neurologist and I’m hoping to find out what type of neuropathy I have which may help when talking with other people with the same type of neuropathy who have found what works for them. Two excellent sources of information are the MN Neuropathy Association (http://www.neuropathy-mn.org/) and the Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/).

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Bob, I understand how those who need help, and those who have abused the
system has made it difficult for the one’s who are in need. My daughter is
a nurse and See’s a lot of people who abuse there lives with pain meds. I
do a lot of counciling. My husband and I minister. You wouldn’t believe the
people who have become addicted to pain meds. It’s something some can’t
help. And you have those who does it for recreation. I have to take pain
meds like most of the the ones on this connection, are won’t be able to
walk, much less get out of bed. I don’t have insurance, so things can get
pricey! I am looking into some right now. I’ve been sick for years, but the
last 2 years have been rough. I try to get things done when I have good
days. I do know that prayer keeps me from being down and blue, which pain
and suffering can cause. I don’t think I go through what you go through are
the others on the connection. My heart goes out for all of you.

salena

I’ve had peripheral neuropathy in my feet for 10 years. I take gabapetin 3 times a day and I take Hydrocodone 3 times a day for pain. The combination of these drugs is the only way I can deal with the pain. I have been looking for information on stem cell treatment for neuropathy but I haven’t seen anything in the US. I have seen some treatments in China and Mexico. Any information on stem cell treatment for neuropathy would be greatly appreciated. I believe it’s coming but it can’t get here soon enough.

@mightybear

I’ve had peripheral neuropathy in my feet for 10 years. I take gabapetin 3 times a day and I take Hydrocodone 3 times a day for pain. The combination of these drugs is the only way I can deal with the pain. I have been looking for information on stem cell treatment for neuropathy but I haven’t seen anything in the US. I have seen some treatments in China and Mexico. Any information on stem cell treatment for neuropathy would be greatly appreciated. I believe it’s coming but it can’t get here soon enough.

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Do you know what the cause is for your neuropathy? Could be diabetes, autoimmune, chemo etc. Mine is autoimmune so I’ve tried a couple of DMARDs with no luck. Might try one more and then IVIG.

Dear @johnwburns

No, I’m in the other category. I don’t have diabetes or cancer (fortunately) or autimmune. They dont know what casued it Thanks for the tips. I may try those.

@rabbit10

Thanks worth a try

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I have fibromyalgia and neuropathy in my legs which they say is from
sarcoidosis, have had 8 spinal surgeries so who knows. Getting hard to
walk!! Briansr

@dbentley

I have been dealing with painful peripheral neuropathy for about 10 to 12
years. My main pain is in the bottoms of my feet but the neuropathy has
worked up to my knees. You talk about a frustrating experience. I
have tried every prescription, compounds, Anodyne therapy, Acupuncture and
Spinal Cord Stimulator. I am on a new and improved Spinal Cord Stimulator
now. I was told when all else fails the last thing they can do is a Pain
Pump. Well I have had that for about 2 years and get a steady dose of
Hydromorphone, Fentanyl and Bupivicaine every day, all day long. I can
also take up to 4 Hydrocodone a day and I also take Lyrica. I have had
Bilateral Endovenous Laser Ablation in both legs and Tarsal Tunnel surgery
on both ankles.

My average pain level is 5 to 6 every day. Now my only hope is that one
of the programs of the new Spinal Cord Stimulator will help. I am
seriously considering going to Mayo Clinic. Would be an expensive trip
from Texas.

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What is a pain pump? I dont think I have ever heard of one. I have a tens 3000 also, I bought it from my chiropractor.I go once a month for my headaces and neck, I have arthritis in the first, third and seventh vertebra caused by a head injury.

@johnbishop

About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I’ve come to regret it a little since it’s gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I’m waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it’s associated with pre-diabetes but I’m not buying that diagosis just because I’ve had it for a long time and do not have diabetes. I think it’s related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I’m really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening…praying that you all will find some relief.

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Johnbishop, I wasnt diagnosed with neuropathy. They think its MS. I was also told that scar tissue from the head injury could give me those same symtoms. When I find out it will be a relief because I will get the right treatment. My daughter in law sells oils, she makes creams for my legs, it doesnt relieve all the pain , but it does help to a point. Most of what I take, I take at night because it makes me sleep, so I do the oils during the day. Know I do take my pain medicine if my pain is not tolerable.I here strength in you and the others posts. I know all that pain is hard to live with, “but” you and everone else has done a wounderful job of hanging in there. You have a lot of strength and youre an inspiration for those who need strength
Salena54

@johnbishop

About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I’ve come to regret it a little since it’s gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I’m waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it’s associated with pre-diabetes but I’m not buying that diagosis just because I’ve had it for a long time and do not have diabetes. I think it’s related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I’m really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening…praying that you all will find some relief.

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Thanks Salena. I hope you are able to find some relief soon. I’ve heard the essential oils have helped some folks. I’m going to an oils learning session tomorrow evening and am planning to a blend of coconut oil, frankincense, cypress and lavender essential oils which is suppose to help if you have peripheral neuropathy. I’ve tried others that help a little but not a lot – PRIM (from herbal shop online), Blue-Emu, Australian Dream, Topricin, and a few others. They do make your feet feel a little better and putting it on helps you check your feet for sores, etc… God Bless!

Liked by mightybear, salena54

@rabbit10

Thanks worth a try

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@johnbishop I looked into the oils (as most of you know, when you’re in pain you look into everything). Please let us know if the oils helped and what oils you used. I will try anything and everything to get off these opiate pain killers. I think they’re doing harm to the rest of my health.

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