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Old 09-09-2019, 01:38 PM   #1
instock
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Default How to proceed?

Hi folks. I'm new here. I've been having an annoying tingling sensation in my feet. No pain, but it drains my life energy and makes me feel generally crappy.
It's been gradually getting worse for about 5 years. I started trying different shoes, then a few podiatrists, finally made my way to a neurologist. EMG was abnormal. Weak signal on the sensory nerves. Definitely something there, but MRI and all the blood work were pretty normal. Doc seems to be running out of ideas. He says 30% of peripheral neuropathy is idiopathic. He tells me drugs are more effective for pain. No good options for tingling. So that's why I'm here. Apparently, this is my new hobby. What's my next move?
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Old 09-09-2019, 11:48 PM   #2
kiwi33
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Hi instock

Welcome to NeuroTalk .

I am sorry to read about your PN. Your doctor is right in saying that it can often be idiopathic.

Please keep us posted here. Other members will be able to offer you support and helpful suggestions.

All the best.
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Old 09-10-2019, 01:22 AM   #3
Streetlegal
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I have used Nortriptyline to dampen down paresthesia (including tingling, buzzing, itching) and it has worked well, so I disagree that tingling can't be helped. My dose has been low--30 mg at night. I've tried Gabapentin, too, but I think the former is somewhat more effective, and less intrusive (just one dose per day rather than 2 or 3).

If you have had similar symptoms for the last 5 years, the good news is that my own neurologist would suggest that this will likely remain fairly similar over time, though it will wax and wane.

Idiopathic, here.
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Old 09-19-2019, 03:25 PM   #4
Auntieqd
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Quote:
Originally Posted by instock View Post
Hi folks. I'm new here. I've been having an annoying tingling sensation in my feet. No pain, but it drains my life energy and makes me feel generally crappy.
It's been gradually getting worse for about 5 years. I started trying different shoes, then a few podiatrists, finally made my way to a neurologist. EMG was abnormal. Weak signal on the sensory nerves. Definitely something there, but MRI and all the blood work were pretty normal. Doc seems to be running out of ideas. He says 30% of peripheral neuropathy is idiopathic. He tells me drugs are more effective for pain. No good options for tingling. So that's why I'm here. Apparently, this is my new hobby. What's my next move?
Has your doctor tested your serum B-12 levels? If lower than 450-500, this could be your problem, many labs & doctors state that lower levels are NORMAL, probably not! Much good info in book "Could it be B-12?" Very enlightening to me about my own problem with PN.
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Old 09-20-2019, 11:06 PM   #5
instock
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Originally Posted by Auntieqd View Post
Has your doctor tested your serum B-12 levels? If lower than 450-500, this could be your problem, many labs & doctors state that lower levels are NORMAL, probably not! Much good info in book "Could it be B-12?" Very enlightening to me about my own problem with PN.
Interesting. My B-12 was 400. Doc made a vague reference to trying a B-complex supplement, so I've been doing that for awhile, but it doesn't seem to do anything. But that is only 50 micrograms of B-12. So I added another 1000 micrograms of B-12. Meh. Still not thrilled.
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Old 09-21-2019, 12:13 PM   #6
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Instock: I deal with my share of neuropathy from hip replacement nerve mess and knee issues and it goes to feet sometimes, but this has been going on for like 9 yrs with me. I can live with it and have tried so many supplements including Inosine and Sphingolin...you can look those up for nerve issues.

A friend who has been challenged with neuropathy for probably 30 yrs or so and taken every drug in the book from her docs and dealt with every drug side effect, FINALLY after hearing me talk about Grape Seed Extract for so long, went to the Grape Seed Ex, she buys hers at Costco...it's an OK product and she buys it for her daughter too. She's gotten so much relief and off the drugs as far as I know. She's in later 80's and her damage is mostly like from a lot of cancer cell radiation and the drugs she took...

Grape Seed Extract addresses so much and even said to "could prevent cancers".. I'm taking it going on 25 yrs.
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Old 09-26-2019, 07:34 AM   #7
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Originally Posted by Streetlegal View Post
I have used Nortriptyline to dampen down paresthesia (including tingling, buzzing, itching) and it has worked well, so I disagree that tingling can't be helped. My dose has been low--30 mg at night. I've tried Gabapentin, too, but I think the former is somewhat more effective, and less intrusive (just one dose per day rather than 2 or 3).

If you have had similar symptoms for the last 5 years, the good news is that my own neurologist would suggest that this will likely remain fairly similar over time, though it will wax and wane.

Idiopathic, here.
Hi Streetlegal..
Do you have any side effects with Nortriptyline? I am currently using supplements (R-ALA, ALC, Omega3 , B12 ) to try and ward off my neuropathy (so far idiopathic). Partially successful. I asked my Dr about Nortriptyline and he advised me to wait a couple of months ,and start a low dose regime , if my neuropathy does not improve by then.. Thanks
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Old 09-26-2019, 08:24 AM   #8
Oscars
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Default Alcohol severe pn

The consensus is I have alcohol pn. I'm only 39 and some doctors believe that is a little young to have this. However, they've tested everything possible and found no other cause. I did have an unsuccessful back surgery, but the pain is not only in my feet/legs, but also my hands. The doctors have tried every pain blocker they can think of and nothing works. On the tolerable side I have tingling, burning, and numbness. On the not so tolerable side I have a large stabbing pain, crushing, and tearing. It's difficult to function. I'm not able to wear anything on my feet because of the pain. Both top, sides, and bottoms. I'm currently on: Cymbalta 90mg., Lyrica 600mg., Bacolophin 90mg, CBD Oil,
B1, B12, Folic acid. Nothing helps. If anyone has had these terrible symptoms please respond. I would also love to hear from someone who has any medication ideas. Neuropathy for 8 months. Haven't used alcohol for 5 months.
Thanks to everyone in advance!
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Old 09-26-2019, 12:29 PM   #9
caroline2
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I would NOT discount nerve damage from back surgery, no way. Any surgery can cause nerve damage to our bodies.

Why not take some advice from #6 above...work with the powerful antioxidant grape seed extract and look to eliminate some of the toxic meds.
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echoes long ago (09-26-2019)
Old 09-26-2019, 09:34 PM   #10
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Quote:
Originally Posted by caroline2 View Post
I would NOT discount nerve damage from back surgery, no way. Any surgery can cause nerve damage to our bodies.

Why not take some advice from #6 above...work with the powerful antioxidant grape seed extract and look to eliminate some of the toxic meds.
Thank you! I really appreciate it.
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