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Old 02-14-2007, 06:34 PM #1
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Question PN update = PAIN revisited

I haven't posted for some days - a rather rough stretch recently but I've got some general ?'s for long time PN'ers. My original and strongly suspected diagnosis was prediabetic neuropathy w/ the current alternate working hypothesis being chemical/solvent exposure, not entirely unreasonable given that I've worked w/ them for 30+years now (not arsenic or heavy metals - they were all negative thankfully).
I know that nerve fiber regrowth is a very long term process and can be accompanied by increased pain as the reenervation occurs but has anyone experienced a reversal in the hair loss on the legs and/or improvement in the typical skin characterisitcs. Also, does anyone know of a correlation between hair loss on the legs and PN progression?
I ask because I'm seeing a pretty remarkable correlation for myself between the amount of leg hair that I've lost in the last 14-15 months (shin and medial calf) and continue to do so and the amount of pain that I experience, i.e the pain continues to increase and the hair continues to decrease. I'll accept some hair loss is due to aging and some may be lost to friction w/ pants or socks but all of the Drs think I'm making a mountain out of a molehill - of course as I told my endocrinologist yesterday, if you're not in constant unremitting pain 24/7 (cold and tendon shortening) then you really have no idea how I feel or why I ask.
Thanks in advance for any suggestions.
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Old 02-14-2007, 08:29 PM #2
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Default I have some of it

Alkymst
As my PN has progressed, I have seen a dramatic reduction in leg hair. I had to shave my legs about 3 times a week before the PN started. Now I may have to shave once a week and it is reallllllly thin now. Not much shaving involved. And this has happened in a period of one year. I don't think age has anything to do with my hair loss.

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Old 02-14-2007, 10:10 PM #3
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Default

Yes, I and some others I know resumed growing hair on the legs quite some time after eliminating the cause of nerve damage. For me it took a few years to reverse much of the skin and hair problem.

Even though my damage was to the central nervous system, the abnormal signals through it affected peripheral nerve function.

Peripheral nerve damage would repair much more quickly.

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Old 02-14-2007, 10:33 PM #4
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Default Silverlady

Thanks for your kind words. I'm sorry that you've also had the same experience - that's heck of a way to not to have to shave ones' legs. I hope that your hair loss wasn't accompanied by an increase in your pain or if so, that you've been able to control it.
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Old 02-14-2007, 10:37 PM #5
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Default Rose

Thanks for your encouraging words - it's reassuring to know that one can have a positive outcome with this damnable condition even if it does take some years. Maybe I'll be fortunate too.
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Old 02-15-2007, 12:57 AM #6
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Hi Alkymst,
My PN was caused by Prediabetes & low b12, i also noticed a loss of hair mostly over my calf muscles, its been growing back for a while now but its not the strong normal hair i had before PN arrived, we call it " bum fluff " over here in OZ you know that light coloured hair that boys get on their face before the real deal comes along and then we have to shave it.

I have been lucky enough to have reversed nearly all [98 %] of the damage to my nerves, in a 3 year period, i say 98% because when its a very hot day, i get a slight burn in my feet & lower legs, but thats only once in a blue moon when the temp is extremely high outside, around the 38 -40 degrease Celcius days.

Whilst healing, i found that i had worsening of symptoms at times, then it would settle down for a while then off it would go again,there was no set pattern to it, that went on for about 2 years then in the last year the symptoms became slightly lessor each time and the bursts of increased burning become further and further apart, THANK GOD.

Have they done a recent glucose tolerance test to see how your prediabetic state is now ? and did they find something in a blood test to confirm chemical exposure ?

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Old 02-15-2007, 01:23 AM #7
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Default I agree with you, Alkymst,

this is one heck of a way to get out of shaving ones legs. My PN stops half-way up my leg and if I let my hair grow, you can see the definite "line of demarcation".
It took about 3 years for the hair to disappear and it didn't start falling out until my pain levels were out of control and I needed help from a pain doc. I have small fiber sensory polyneuropathy idiopathic, (I do not have diabetes.) It was one of the things that my neurologist checked on my first visit a few years ago. And I also feel that when I have pain 24/7, everything is a big deal to me!

Take care!
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Old 02-15-2007, 08:09 AM #8
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Default Brian

Brian,
Thanks for the encouraging words- I remember similar hopeful words from you from one of my earlier posts. I haven't had a OGT for several months, just had a FG = 98 (2/2), normal but that isn't the whole story I know. As for the chemical exposure, I've had the blood work for heavy metals, arsenic, etc and all were normal - good news. My understanding is that neuropathy derived from a chemical exposure usually develops rather suddenly and generally after an acute exposure. Once the agent is removed the neuropathy then begins to resolve itself. However, my PCP is looking into the medical literature to see what she can find for chronic exposure, as am I. I don't know of any specific blood tests for solvents like hexane, methyl butyl ketone or toluene.
I'll post again when I know more - I go back to UPenn in ~3 weeks to see the neurologist there so I've got a lot of questions to raise.
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Old 02-15-2007, 08:22 AM #9
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Default Nancy-h

Nancy-h,
Thank you for your thoughts. I remember that you too suffer from small fiber neuropathy from one of your replys to my introduction to the forum. You know exactly what I'm talking about for the cold pain - it is difficult to describe. My wife and I had a 2h snow-shovel fest to clear our driveway of ice and snow yesterday and when I came in both feet were like blocks of ice -a warm epsom salt bath or even wrapping them individually in a heating pad for 30-40 minutes didn't help a lot.

The hair loss and the continuing pain progession is why I'm becoming more concerned about the progression of the damnable condition and its origin. My endocrinologist who has been treating me for ~12yrs now for Hashimoto's thyroiditis commented earlier this week that he hadn't ever seen anyone develop painful small fiber neuropathy as rapidly as I have and wonders himself about the prediabetic diagnosis. Since he has a very large practive and treats many diabetic patients I listen to him carefully.

Thanks for writing - it's always nice to have someone who can sympathize but also empathize with your individualized pain. I hope you have ever increasing amounts of pain free time.
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Old 02-15-2007, 08:40 AM #10
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Default Check out the following site....

http://telemedicine.org/stamford.htm

On the left-hand index click onto the diabetes in skin disease and read away. You should find parts of your explanations there, tho not all. It all is connected to the 'whole'?

I am like others here.. lots of changes occurred and still occur due to the neuropathy.

As for the tendon shortening...do ask for Therapy! Learn to do stretching exercises that are SAFE for you! If you can't get therapy from your docs either appeal or get a second opinion...it is imperative to keep those muscles and tendons as flexible and fit as possible for the longer term. By doing so, you could avoid other damage and injuries in the future.

I hope this helps! - j
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