Reply
 
Thread Tools Display Modes
Old 02-14-2007, 10:33 PM #1
Alkymst's Avatar
Alkymst Alkymst is offline
Member
 
Join Date: Jan 2007
Location: Pennsylvania
Posts: 231
15 yr Member
Alkymst Alkymst is offline
Member
Alkymst's Avatar
 
Join Date: Jan 2007
Location: Pennsylvania
Posts: 231
15 yr Member
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.
Alkymst
Alkymst is offline   Reply With QuoteReply With Quote
Old 02-14-2007, 10:37 PM #2
Alkymst's Avatar
Alkymst Alkymst is offline
Member
 
Join Date: Jan 2007
Location: Pennsylvania
Posts: 231
15 yr Member
Alkymst Alkymst is offline
Member
Alkymst's Avatar
 
Join Date: Jan 2007
Location: Pennsylvania
Posts: 231
15 yr Member
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.
Alkymst
Alkymst is offline   Reply With QuoteReply With Quote
Old 02-15-2007, 12:57 AM #3
Brian Brian is offline
Senior Member
 
Join Date: Oct 2006
Location: Australia
Posts: 1,256
15 yr Member
Brian Brian is offline
Senior Member
 
Join Date: Oct 2006
Location: Australia
Posts: 1,256
15 yr Member
Default

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 ?

Brian
Brian is offline   Reply With QuoteReply With Quote
Old 02-15-2007, 01:23 AM #4
nancy-h's Avatar
nancy-h nancy-h is offline
Member
 
Join Date: Aug 2006
Posts: 633
15 yr Member
nancy-h nancy-h is offline
Member
nancy-h's Avatar
 
Join Date: Aug 2006
Posts: 633
15 yr Member
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!
Nancy-H
nancy-h is offline   Reply With QuoteReply With Quote
Old 02-15-2007, 08:09 AM #5
Alkymst's Avatar
Alkymst Alkymst is offline
Member
 
Join Date: Jan 2007
Location: Pennsylvania
Posts: 231
15 yr Member
Alkymst Alkymst is offline
Member
Alkymst's Avatar
 
Join Date: Jan 2007
Location: Pennsylvania
Posts: 231
15 yr Member
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.
Alkymst
Alkymst is offline   Reply With QuoteReply With Quote
Old 02-15-2007, 08:22 AM #6
Alkymst's Avatar
Alkymst Alkymst is offline
Member
 
Join Date: Jan 2007
Location: Pennsylvania
Posts: 231
15 yr Member
Alkymst Alkymst is offline
Member
Alkymst's Avatar
 
Join Date: Jan 2007
Location: Pennsylvania
Posts: 231
15 yr Member
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.
Alkymst
Alkymst is offline   Reply With QuoteReply With Quote
Old 02-15-2007, 08:40 AM #7
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
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
dahlek is offline   Reply With QuoteReply With Quote
Old 02-15-2007, 08:48 PM #8
Alkymst's Avatar
Alkymst Alkymst is offline
Member
 
Join Date: Jan 2007
Location: Pennsylvania
Posts: 231
15 yr Member
Alkymst Alkymst is offline
Member
Alkymst's Avatar
 
Join Date: Jan 2007
Location: Pennsylvania
Posts: 231
15 yr Member
Default Dahlek

Many thanks for the website - I visited already and it did answer some of my questions - most importantly it had pictures which really are worth a thousand words, at least for me, when trying to picture a condition or disease.

Reminds me of some time many years ago I spent in the Army at the Walter Reed Army Institute of Research. Across the street was the AFIP, Armed Forces Institue of Pathology where they had preserved examples of virtually any diseased or abnormal organ/tissue known. I still smoked heavily at the time although the chance to see a disected healthy lung -bright pink, alongside the lung tissue from a long time smoker, literally brown-black and shriveled like a prune, gave me a long pause to reflect on the habit - sadly not enough pause to quit mind you - that took a heart attack at age 29 to get my mind right.

Regarding the therapy - I've been in PT multiple times w/ multiple sessions for the problems and have been doing numerous exercises (safe ones) to stretch the plantar fascia, Achilles and tibial tendons too. Worn orthotics for 15+yrs and yet the degeneration continues seemingly unabated - frustrating as Hell to put it in the vernacular.

My therapist suggested ESWT (extracorporeal shock wave therapy - a sort of lithotripsy for the soft tissue of the foot) to break up the adhesions on the plantar fascia and stimulate new tissue growth. I checked into it - it's really quite expensive and of course, an experimental treatment as defined by my insurance - naturally!!
Thank you again for the website - it did help a lot. I hope you have more and more pain free times ahead.
Alkymst
Alkymst is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
B-12 and CMT revisited Alkymst Peripheral Neuropathy 4 01-22-2007 07:27 PM
Zanaflex Revisited :) Donna7 Thoracic Outlet Syndrome 5 10-13-2006 12:42 PM
Pity-Party Room, revisited... ponyboy Spinal Disorders & Back Pain 5 09-16-2006 10:49 AM


All times are GMT -5. The time now is 11:42 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.