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Old 11-24-2008, 03:06 PM #1
EHorst99 EHorst99 is offline
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Default How fast has your PN progressed?

My first numbness feelings showed up on the tips of my toes almost exactly one year ago.

In the last 5 weeks, it's gone from foot pain and that "fuzzy socks feeling" at my ankle to foot pain (largely handled by gabapentin) to the fuzzy socks feeling almost all the way to my knee. Almost 12 inches of "progression" in not much more than a month.

How does this compare to you?

And, my earlier question, does it ever stop?

Thanks,

Ed
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Old 11-24-2008, 04:20 PM #2
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Lightbulb I'd say that is pretty rapid...

I'd get tested for heavy metal toxicity.

Also autoimmune issues.

Anything in the hands?

When I had my severe PN early at 30, I had considerable hand issues as well.

Did you have B12 tested? Do you know the result? Do not accept "normal" from the doctor without the numbers. If they are
below 500, you need B12 ASAP. In fact I would be doing it NOW.
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Old 11-24-2008, 04:29 PM #3
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Default I agree with Mrs. D.

My 'toes' were numb when I first got a referral to a neuro. However I ended up in a hospital with a neuro progression NO ONE wants to have the week before that neuro appointment!
I would call my GP NOW and if he'd referred you to a neuro do same and they will likely say 'Go to the ER'....not fun, but this IS a Monday? Because of that you might be squished into an emergency appt tomorrow. CALL NOW! Don't DELAY! [My events occured on a Wed!]
Why? I had to spend 14 hours in an ER before I was 'seen', then the resident on call took another 4 hours to tell me he'd found 'neuropathy' on the internet! In a hospital for three days, and then 'kicked' out, could hardly stand, walk or anything yet..deemed safe to be on my own. NOT!
This is not to scare you, but to seriously URGE you to go see those KEY docs NOW! Don't put it off until tomorrow. Please! And 's in the meantime, it's a scary thing, but with care...good care, it is not at all. Get that care! - j
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Old 11-24-2008, 04:51 PM #4
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Default

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Originally Posted by mrsD View Post
I'd get tested for heavy metal toxicity.

Also autoimmune issues.

Anything in the hands?

When I had my severe PN early at 30, I had considerable hand issues as well.

Did you have B12 tested? Do you know the result? Do not accept "normal" from the doctor without the numbers. If they are
below 500, you need B12 ASAP. In fact I would be doing it NOW.
I appreciate the suggestions, but I'm mostly asking about how quickly others PN had progressed in order to form a comparison with my own.

But, to answer the questions...

There's nothing with the hands (yet). My understanding is that neuropathies are length dependent and that hands don't typically get involved until there's leg issues almost to the top of you thigh (typically where your fingers tips are when you're standing up.)

I've had most tests done over the past number of months including autoimmune, metals, and B12. All the tests, thus far, have been "normal." But I don't have the tests in front of me, so I can't quote the B12 numbers. I'm seeing her again on Tuesday next week and will get a copy of all of my results so that I can look at them in light of what others are saying.

I've went ahead and ordered Methyl B12 based on what others have suggested. It can't hurt.

The rests of Liza Jane re: Lyme's tests -- originally negative and now positive from Igenix -- may be interesting. I was test for Lymes many months ago, but not by Igenix.

Thanks,

Ed
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Old 11-24-2008, 04:52 PM #5
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My 'toes' were numb when I first got a referral to a neuro. However I ended up in a hospital with a neuro progression NO ONE wants to have the week before that neuro appointment!
I would call my GP NOW and if he'd referred you to a neuro do same and they will likely say 'Go to the ER'....not fun, but this IS a Monday? Because of that you might be squished into an emergency appt tomorrow. CALL NOW! Don't DELAY! [My events occured on a Wed!]
Why? I had to spend 14 hours in an ER before I was 'seen', then the resident on call took another 4 hours to tell me he'd found 'neuropathy' on the internet! In a hospital for three days, and then 'kicked' out, could hardly stand, walk or anything yet..deemed safe to be on my own. NOT!
This is not to scare you, but to seriously URGE you to go see those KEY docs NOW! Don't put it off until tomorrow. Please! And 's in the meantime, it's a scary thing, but with care...good care, it is not at all. Get that care! - j
What was your eventual diagnosis?

How did they correct this rapid onset, in you case?

Thanks,

Ed
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Old 11-24-2008, 05:35 PM #6
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Lightbulb the way I look at it....

If you have a toxin or metabolic problem...then PN will be not localized to the feet and legs.

Localization should be looked at as coming from the back.
Or circulation. If you smoke, I'd be looking at circulation.

Diabetic PN does start in the feet. But other causes/triggers do not localize just there.

My PN was thyroid induced early... and it was not only in the feet.
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Old 11-24-2008, 05:46 PM #7
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Originally Posted by mrsD View Post
If you have a toxin or metabolic problem...then PN will be not localized to the feet and legs.

Localization should be looked at as coming from the back.
Or circulation. If you smoke, I'd be looking at circulation.

Diabetic PN does start in the feet. But other causes/triggers do not localize just there.

My PN was thyroid induced early... and it was not only in the feet.
I don't smoke, but I am overweight and have been for years. Although the basic glucose tests came back normal, after reading things on this board and elsewhere, I intend to ask for tests for impaired glucose tolerance -- i.e. "pre-diabetes". There are some reports on the internet that as many as 40% of those people originally labeled "idiopathic" turned out to have IGT.

We'll see...
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Old 11-24-2008, 06:55 PM #8
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Default Onset was semi-fast....

A month from the toes being affected to the ankles and hands [when I went to the ER] up to the knees and the elbows. while waiting...
Took me a year and 3 neuros to get the diagnosis of CIDP [Chronic Inflammatory Demeyelinating Polyneuropathy] After that diagnosis further progression was slowed to less than the movements of tectonic plates? Treatment for this is expensive as in $$$$$ mega, but, I'm lucky with good insurance? Before then tho it was downright scary. BUT....Many issues can come into play and tests are extensive! You will be MRI'ed, CT'ed and blood tested out the wazoo. On the stickies above there is a reference to that and many other neuro issues that can cause your problems.
http://neuromuscular.wustl.edu/alfindex.htm This index cites ALL possibilities, and it can be mind-boggling? It takes Time and copies of your own test results in-hand to even begin to try and learn about what all is going on with your body. I do know different states have different rules about YOU the patient getting copies, well, just ask your doc for copies of the tests of all sorts and YOU do some research on them! You mite be surprised about what all you can find out about yourself in this quarter. Test results are the most useful tool to help YOU find out what all is going on! That is my most HUMBLE opinion?

OK Did you call your docs???? Say yes or no...and why.
In the meantime don't panic - good things for the interim? - j
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Old 11-24-2008, 07:58 PM #9
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Quote:
There's nothing with the hands (yet). My understanding is that neuropathies are length dependent and that hands don't typically get involved until there's leg issues almost to the top of you thigh (typically where your fingers tips are when you're standing up.)
Mine started in my hands, with ulnar neuropathy 10 yrs ago. About 2 years after my hands, then it started in my feet with numb toes, burning feet. It took me 6 yrs to figure out what was going on, and I started taking B12, which has made a huge difference. My neuropathy happened because of celiac/gluten intolerance, and going years without a diagnosis. Ten years after the diagnosis of carpal tunnel, my toes do not go numb, my feet don't burn too often, my hands have improved some, and I am not on pain meds. With luck, you can slow the progression, sometimes stop it.
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Old 11-25-2008, 08:50 AM #10
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Lightbulb a fasting insulin

Checking fasting insulin (as well as glucose) is often very
revealing of insulin resistance.

When people have insulin resistance often the fasting is glucose is normal or even a bit low, until it gets bad enough for
pre-diabetes to appear.

So checking the fasting insulin level is useful. (do not engage in any exercise before this is taken, as it will skew the result).

If elevated then you can start with supplements that help insulin work. And there are many of those that do work.
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