new member sensory peripheral neuropathy
 

It is so nice to find a site like this. I am 65 and have sensory peripheral neuropathy of unknown origin. It began 10 years ago in my left big toe and over the years has progressed above my ankles. There appears to be no motor impairment, but lately have begun to experience numbness in my finger tips. I am a psychologist and had to retire from my practice a few years ago because of the level of discomfort I experienced from sitting for long periods. I take gabapentin and it does provide some relief from the tingling. I have no stabbing pain. However, there is muscle tissue wasting in my feet.

I have lost the sense of feeling in my feet,but am able to walk because of pressure feedback. I have always stay in excellent shape through weight training and aerobics. I can no longer run, but do hard training on a recumbent bike. I do weight exercises to strengthen my calves and ankles and it has really helped. Maybe that has prevented or postponed motor nerve involvement. I wanted to also share with the group that I do balance training with the Wii Fit games and I definitely believe that it helps build new neuropathways for improved balance. The games are also fun with simulated ski jumps and slalom runs as well as other balance games.
I also use a balance board to strengthen those pathways.

Has anyone else out there developed a similar type of neuropathy that started in their late 50s and is primarily sensory. Thanks for listening

Actually--your presentation--
 

--and age of it is not uncommon at all.

Can you tell us what kind of testing has been done to find any etiology?

The Liza Jane spreadsheets are excellent for comprehensively breaking down testing for neural problems of many types (and great for tracking test results over time, to see patterns):

www.lizajane.org

my PN started exactly like yours, numbness in the left big toe. I was 44. It has now spread up to my knees bilaterally and also in my hands bilaterally. In the first few years even though my feet were numb, if i stepped on anything or banged them the pain was all out of proportion to the injury. Fore the last few years though my feet are dead numb though i still get shocking and squeezing pains and when i walk on them i feel like im walking on broken bones. From emg/ncs my PN is sensory motor axonal with demyelination. My cause is toxins. Were you exposed to any toxins?

There are some drugs that cause unexplained PN.

One is the statin family for lowering cholesterol.

Another is the fluroquinolone antibiotics (overused today) including Cipro, Levaquin, and Avelox.

Low B6 levels, low B12 levels, Low Vit D.
There is a B12 sticky at the top of each page here.

There are metabolic causes...insulin resistance and pre and frank diabetes, and low thyroid levels are the main ones.

Genetic (CMT) and autoimmune are more often progressive.

Gluten intolerance-- this is becoming better known today.
We have had several posters with this diagnosis.
http://jccglutenfree.googlepages.com/

exposed to toxins
 

Thanks for your response. You know, I really don't know if I have been exposed to toxins. In college I did work at a DuPont chemical plant and a ship building company. Common laborer and pipe fitter's helper so no telling what I got exposed to. I was also accidentally shot in the hip with a 410 shotgun when I was 18. The birdshot ,which is lead, is still in me, but the heavy metal tests have all been negative. I am able to walk without pain because of an excellent orthotic If I walk on them without shoes, it feels very uncomfortable, but like you, my feet are essentially dead. Another strange sensation that I get often is an olfactory hallucination. In other words, I smell something burning, but nothing is. Mine has been diagnosed as axonal sensory PN of unknown origin, (idiopathic)

How was yours diagnosed and what toxins were you exposed to? Again thanks for your response. Jim

this is the second time im typing this the first was lost somehow.....

as with most PN my diagnosis was a result of a process of elimination. various blood tests, mri's, spinal tap etc. eliminated possible causes. My official diagnosis is still ideopathic because a toxic cause cannot be proved at this point however i am sure of the cause and my last two neurologists agreed. Also the bilateral aspect with the areas involved and the rate at which it spread is consistant with a toxic cause according to medical literature i have come accross over the years. I had a large long term exposure over a period of 4 months. This is a partial list of what i was exposed to.

1. alkaline dust
2. aluminum
3. Antimony
4. asbestos,
5. Barium
6. Benzene
7. calcium
8. Cement dust
9. charred wood,
10. Chlorine
11. Chromium,
12. Chrystalline silica
13. chyrosotile,
14. coarse particles,
15. Cobalt
16. Copper
17. Dioxin
18. foam,
19. furans
20. glass fibers
21. Hydrochloric acid
22. iron
23. jet fuel,
24. lead,
25. magnesium
26. mercury,
27. Metals
28. Molybdenum
29. paints,
30. Particle bound polycyclic aromatic hydrocarbons PAH’s
31. Particulate matter PM
32. perfluorochemicals – manufactured chemicals used to make products that resist heat, oil, stains, grease and water-
33. phthalates,
34. plaster,
35. Polybrominated diphenyl ethers
36. polychlorinated biphenyls, pcb’s,
37. polychlorinated furans
38. polycyclic aromatic hydrocarbons PAH’s,
39. pulverized cement,
40. pulverized glass fibers,
41. pvc ,
42. silica,
43. soot,
44. Synthetic vitreous fibers (SVF’s) man made vitreous fibers such as insulation
45. Toluene
46. vermiculite,
47. Volatile organic compounds
48. Zinc

OMG that is a horrible mess....all from 9/11!

Those photos of the dust clouds, and the aftermath....people never realized.

I hope you have some disability from all that!

Did you ever get tested for heavy metals...? ever been offered
chelation?

The furans and plastics however, many are never exposed to that kind of stuff.

That's quite a list of toxins
 

I guess with the state of the art that currently exists in neurology regarding the differential treatments for idiopathic neuropathy even where toxins are suspected, the saying hammered into me during my clinical training applies: A difference that makes no difference is no difference. In other words if they are all treated the same way, it doesn't really matter what it is. How did you get such enormous exposure? Was it 9/11 ?

it wasnt for quite a period of time before i had any type of blood tests for toxins. Even though i started to show symptoms of PN about a month later, I had no idea of what was going on, first thinking i had an ingrown toenail, then later that my back was the problem. I do have quite a few herniated and bulging discs. It took two years before i realized that i had PN (after researching online numb painful feet and finding the braintalk website) and a few months after that that a diagnosis was made. I was dealing with numerous respiratory infections during those years over 25 of them the first two years alone and was trying desperately to keep working, i had young children. Because of the period of time elapsed and nothing showing in blood then i could never get a doctor to initiate a chelation though i did do one outside of the main medical establishment. This goes back to the other thread and you and others helped me in ways you will never know.

I'd like to clarify my statement.... It should read...

I hope you have disability PAYMENTS from all that, at least.

I am glad the postings here helped you, echoes.