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rabbit10 (@rabbit10)

Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Nov 3 12:45pm | Replies (2200)

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@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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Replies to "About 10 years ago when I had my doctor how they can tell if I have..."

Autoimmunity caused mine, which is now severe. I have Sjogren’s Syndrome but a number of autoimmune diseases can cause it. Just a thought.

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.

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.

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

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!

Me too. It took them four years to find it. They didn’t believe me because the blood tests were “inconclusive” and they said I had fibromyalgia as I continued to deteriorate.

Isolating an autoimmune disease can be very complicated unless the symptoms jump out at them, like discoid lupus with corroborating blood work. Did you have a positive ANA test? Any indicators of ongoing inflammation like a positive ESR and/or CRP? What made them dump it into the fibromyalgia bucket? My pain has subsided the longer that I’ve had the neuropathy, now numbness is the primary thing. That and its impact on my gait. I have to be careful walking over uneven surfaces. The pain meds that I use now are gabapentin and duloxetine, which are usually adequate. I have some tramadol too and will use that only if things get out of hand from too much walking. If I had any advice I would say to keep walking, even with pain. If you have a treadmill, make yourself use it. I’m convinced that a lot of waking has arrested the progress of my neuropathy but medications have probably helped as well. You may never find out the root cause for your problems. I’ve never heard of fibromyalgia causing neuropathy but I’m not sure that’s what you said. Anyway, don’t let the pain beat you, take control of it.

Autoimmune failre is the prime suspect for me also. Prior to this neuropathy, I had been in the hospital for a week with a severe sinus infection which migrated to my lungs. I was put on large doses of prednisone……and there it was…

I sent for an oil concoction – frankincense, myrrh in a purified coconut oil… cost $19 for about 3 oz – don’r know yet whether it will help my PN feet. My knees and ankles are all messed up too – so using it on feet, ankles and knees. I’ve been using it for about a week now and can’t really tell that it’s helped. It’s so hard to figure out what to do when there are so many well-meaning people/doctors of various skill levels and/snakeoil sales promotors. If it wasn’t such a nasty condition, one could call it a circus – in fact, I think I will call it a circus. I’m getting the impression that there are so many forms and causes of these symptoms – all somewhat different, that it may take the medical community to get in there and determine if these are all the same thing or if there are different causes, symptoms and treatments/cures that can be used for whatever type of PN is camping on your body.

All of these snake oil vendors sell a quick fix when in fact there isn’t any. I’ve gone through a bunch of alternative therapies for various things and while some might have some value for some things, there is no fix out there for PN that I can find. Before you buy any of this stuff check reputable sites for any recommendations. MD Anderson has collected a lot of info about alternative medicines at https://www.mdanderson.org/education-and-research/departments-programs-and-labs/programs-centers-institutes/integrative-medicine-program/reviews-of-therapies/index.html
Remember that these therapies are unregulated so you may be paying for nothing. On the other hand, if you stumble on something that gives you a little relief research it to make sure its safe. Good luck.

I am using a combo of eucaliptis (sp) and tree tea oil mixed with almond oil. seems to calm it down. Vicks vapor rub calms it. Also use on ankles and legs as they like to torture me also. When I can’t get anything to calm it down, I get up and put my feet on my vibrator. It is a nice one, has a base of about 5 inches by 8 inches

I spent $3500 at Realief In Brooklyn Park, MN last summer. I have feeling in my thighs and legs now, and some i my feet. Yes. it is expensive for the treatment and maintenance, but I was falling 6 to 7 times a week on a regular basis and at 68 years old I felt there would come a time where I wouldn’t bounce so well. The debilitation from breaking a hip, for example, would cost me a lot more than a lifetime of Realief. Giving it a try was certainly worth it for me. As the saying goes “I ain’t well, but I sure am better.”

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