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Old 03-06-2020, 01:49 AM #1
Streetlegal Streetlegal is offline
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Default Is the normal progression towards pain?

I was diagnosed with Idiopathic PN two and half years ago. Although my symptoms have fluctuated, for the most part, they have been "painless"--fasciculations and tingling, buzzing, and itching.

However, over the last month or so my symptoms have changed: they are dominated by shooting pain and shocks in my feet and, occasionally, legs.

Last fall, I was doing well so well and was full of hope, experimenting with anticholinergic patches; however, I stopped taking them, and, on top of that, had a really stressful winter.

Now, my symptoms have changed: I have the dreaded shooting pains (to the extent that I involuntarily let out a shout on occasions). I am also back on nortripyline which makes me sad as I was off it for the 6 months previous when I was doing so well.

Is this the standard trajectory? Does PN move from the discomfort of buzzing and tingling towards pain?

Is there a correlation between the extent of nerve damage and the symptoms--does pain indicate things have worsened, or is it just another facet? Could it blow over?


Thanks,
Paul

Last edited by Streetlegal; 03-06-2020 at 02:16 AM.
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Old 03-06-2020, 03:11 PM #2
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Hi Paul,
I'm no expert in this topic but as someone with MS for many years I've found some ways of getting at information.

"Idiopathic" means that there's no known cause. Since there over 100 types of neuropathy, it might be difficult to say what you can expect your neuropathy to do.

Some information is here:

Peripheral neuropathy: Symptoms, causes, and treatment

Lots of neurological problems are things you have to find ways of living with, I'm afraid. You try diet changes, you try different types of activity, reducing your activity, increasing it, exercising in certain ways, you try heat, you try cold, and sometimes you find that the whole problem will go away if you just change the way you hold certain parts of your body during the day.

We're all just groping around in the dark when it comes to a lot of neurological problems.
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Old 03-07-2020, 07:23 PM #3
TheraPeu TheraPeu is offline
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Hi StreetLegal,

I’m having the same symptoms as you. Can you please list the test that were carried out and the result.

Thanks.
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Old 03-07-2020, 09:51 PM #4
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Hi TheraPeu--

My neuro won't test me. He says that my symptoms suffice. I did have a MRI and blood tests to rule out MS and Lymes.
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Old 04-29-2020, 01:36 AM #5
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You are me. PN going on 3 years, numbness and some burning-all in feet- and sloooowly getting worse. Praying to stave off pain, but also kinda waiting for it.
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Old 04-29-2020, 09:24 PM #6
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I've dealt with the burning, tingling, numbness for going on 10 yrs, all from hip replacement in 2010...talk about damage I live with from this major surgery that left me with many complications/side effects.....no more surgeries if I can do anything about that.

I take many supplements, and use topicals and can say a lot of the burning, etc is reduced a lot but live with a numb thigh and other damage on my whole right side.

No tests from any doctors, I know what happened to me. I've learned a lot here and also on my own.

Favorite supplements for the Burn issues are Inosine, Grape Seed Extract and even dosing of Vit C thru the day, more since this virus issue we're going thru.

Favorite topicals are Torpricin, Ultra Tiger Balm, Absorbine Vet Linament and some others. I do a lot of alternating on these and use some others too. I've tried so many in these almost 10 yrs.
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