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Old 03-20-2010, 04:23 PM #1
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Default How far can non-diabetic PN progress?

I have "idiopathic" peripheral neuropathy although I was exposed to Benzene and other VOCs in the workplace which I believe are the cause. Biopsy shows c-fiber neuropathy. Currently my symptoms are made bearable by Lyrica, but my pain has progressed from occasional burning on the soles of my feet 2 years ago, to burning, tingling, numbness, and sometimes searing pain below the knees and elbows. If I bump the ends of my fingers or my feet it is very painful. I have other sensory nerve symptoms: low blood pressure, migraines, constipation, livedo reticularis, cold body, memory loss, etc. I also have fibromyalgia which is currently leveled off.

I'm trying to plan my future (I'm 53) and wondering how much more disabled I might become. My neurologist said I won't be in a wheelchair but was otherwise evasive. I am finding walking increasingly painful, my toes are always sore, and my need for pain meds is creeping up. I am taking all the supplements my naturopath recommended, including 5000 hydroxocobalamin i.m. every 3 days, B6, Zinc, CoQ10, . . . I am currently on sick leave from my stressful health-care job. What does the future hold in store for us folks?
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Old 03-20-2010, 08:06 PM #2
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Quote:
Originally Posted by akimbo View Post
I have "idiopathic" peripheral neuropathy although I was exposed to Benzene and other VOCs in the workplace which I believe are the cause. Biopsy shows c-fiber neuropathy. Currently my symptoms are made bearable by Lyrica, but my pain has progressed from occasional burning on the soles of my feet 2 years ago, to burning, tingling, numbness, and sometimes searing pain below the knees and elbows. If I bump the ends of my fingers or my feet it is very painful. I have other sensory nerve symptoms: low blood pressure, migraines, constipation, livedo reticularis, cold body, memory loss, etc. I also have fibromyalgia which is currently leveled off.

I'm trying to plan my future (I'm 53) and wondering how much more disabled I might become. My neurologist said I won't be in a wheelchair but was otherwise evasive. I am finding walking increasingly painful, my toes are always sore, and my need for pain meds is creeping up. I am taking all the supplements my naturopath recommended, including 5000 hydroxocobalamin i.m. every 3 days, B6, Zinc, CoQ10, . . . I am currently on sick leave from my stressful health-care job. What does the future hold in store for us folks?
I also have idiopathic SFN, and was also exposed to benzenes, and other VOC;s at my place of employment,, although I am told I have Sjogrens Syndrome, even though I have never shown the antibodies to it,, all I can tell you is this,, my neuropathy has progressed a lot in hte past two years,, first it was the feelig of water running down my legs,, to numbness,, burning,, then a progression up the torso to the arms and hands,, which burn constantly,, I do know about Neuros being evasive,, I am only 54 and the thought of beinin pain and in a wheelchair scares teh hell out of me,, its no way to live thats fir sure, I have tried jsut about all hte meds for PN,, and none workk for me, I have gone the IVIG route, was scheduled for Rituxin,, but a last minute infection made that impossible,, so what does the future hold for you and me?,, I really dont know,, but like I tell everyone else,, and it was said here a few times,, when I fall over and cant do a thing for myslef,, it then becomes someone elses problems,, I mourn for my old life
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Old 03-20-2010, 08:55 PM #3
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Pretty far, but in general, that is unusual, even rare.
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Old 03-21-2010, 05:24 PM #4
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Default Not so 'peripheral' then is it?

Well rats. The peripheral neuropathy is not so peripheral any more! I thought initially since the biopsy from my hip area was normal and the one from my ankle showed SFN that it was limited to that area, but now that I've made the link to all my other autonomic symptoms it seems much more extensive. Very scary indeed. I will continue with my supplements and hope for the best.

Feel the Burn, did you ever get any compensation for your Benzene exposure? My neurologist sent me to see an occ health specialist but he was very evasive and wrote a silly report. He normally represents employers so I was not surprised. I did come across a paper that talked about benzene (hydroquinone) causing PN. I just don't know if I have the energy to pursue it.
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Old 03-22-2010, 10:14 AM #5
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Well rats. The peripheral neuropathy is not so peripheral any more! I thought initially since the biopsy from my hip area was normal and the one from my ankle showed SFN that it was limited to that area, but now that I've made the link to all my other autonomic symptoms it seems much more extensive. Very scary indeed. I will continue with my supplements and hope for the best.

Feel the Burn, did you ever get any compensation for your Benzene exposure? My neurologist sent me to see an occ health specialist but he was very evasive and wrote a silly report. He normally represents employers so I was not surprised. I did come across a paper that talked about benzene (hydroquinone) causing PN. I just don't know if I have the energy to pursue it.
Me either,, I just dont have the energy to Pursue it either,, In my former occupation I worked as a electrician for a govt research lab,, for 36 years I worked in many labs that has so much stuff in them,, when we had to work above the ceilings,, the exhaust system was just falling arpat from the amount of stuff that escaped teh labhoods,, and was depositied above teh ceilings,, there also was a place called chemical handling,, it was fulll of barrels of stuff,, benzene,, and a ton of other chemicals that either leaked or just were not nice to be around,, we had to install grounding systems to ground teh barrels,, and it was not unnatural to come in contact with some of this stuff,, I know they have run heavy metal testing onme,, but I just cannot get a answer as to what these test shwoed,, I am assuming they were negative,, but I hve requested teh results so many times its crazy,, sometimes i htinmk its a conspiricy to se how much they can mkae me suffer,,
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Old 03-22-2010, 11:24 AM #6
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Default toxic neuropathy

I also have SFN (almost 5 years) due to toxins. It also might be benzene and many others. I'm female, 54.
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Old 03-23-2010, 02:46 AM #7
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I also have the damm thing, although to a lesser degree.
No cause found as yet.
Hands, feet & legs. Feet started first & had burning until I started on the B12.
So far no pain but I can get cramps in my feet if I spend too much time on them.
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