My husband was stationed at Hill AFBm Utah. I googled Hill and founf that they are dealing with Tridoroethene in the ground water near the side of the base we lived on. I don't know what that is, but I guess it has been there since the 1940's.

Dear Julie,

Sorry to hear about your pain. I, too, suffer with neuropathy, but not as severely as yours. A few things you should definitely have done, if you haven't already:

1. An 2-hour oral glucose tolerance test, along with HgA1C, to see if you are diabetic or have impaired glucose toleranace. Both conditions are highly associated with neuropathy and, if treated, can help stop it from worsening and may even lead to slow recovery.
2. EMG to test your large nerve fibers. If your EMG is normal, then you should have a skin biopsy, measuring the epidermal nerve fiber density at the foot or calf and the thigh. This test is relatively new and there's only one lab that offers it, called Therapath in New York. It will show if you have small fiber damage.
3. Be sure your doc knows your alcohol history; next to diabetes, alcohol is the most common cause of neuropathy. Good news is that patients who stop ETOH can often look forward to recovery from neuropathy.

Hope this helps

Just one addition--
 

--while the skin biopsy to test for intraepidural nerve fiber density is not a common test, and many places have no idea what it is, it's certainly offered through more places than Therapath.

I had mine done at the Cornell-Weill Center for Peripheral Neuropathy. It's also done at Massachusetts General, The Jack Miller Center in Chicago, Johns Hopkins in Baltimore, where it was first researched and developed, and a few other tertiary centers. And Hopkins will send a kit to physicians now so that skin samples can be taken and sent back to their lab for analysis.

The samples need a certain type of staining and electron microscopy for analysis, and that's why this procedure, which is the current gold standard for diagnosing small-fiber damage, is not more widely available.

cause of your neuropathy
 

Julie,

You say the docs aren't sure why you have the neuropathy. Have they check out diabetes or impaired glucose intolerance with 2-hour oral glucose tolerance test and HgA1C blood work? The following should also be part of the regular neuro workup:

- Heavy metals test (lead, mercury, arsenic).
- B vitamins
- History of alcohol consumption
- EMG and skin biopsy for large- and small-fiber nerve damage.

Good luck....

Me to I feel your pain
 

Hello yes I have SEVERE NEUROPATHY in both of my feet to the point I cannot sleep and walk much I am 37 years old I found out it is from diabetes it sounds like that is what you may have yourself

Hi there
I only skimmed through the other responses, and I am not here to ask you questions, but just to let you know that somewhere out there (over here :-) is a 29 year old woman with severe neuropathy ( at the moment idiopathic)
I burn from my neck to my feet. Thighs, stomach, arms and legs at the moment. And that is on lyrica, supplements, oxycodone, and hydromorphone. I can only imagine what it would feel like withOUT the medication
If you ever want to vent, please don't hesitate to PM me.
I pray for your strength.

Featherbullet, I too have severe peripheral. I'm replying to the meds that you are taking and what I've learned this week. I too take lyrica, 200 mg. 3x plus an extra at bedtime. Gabapentin 600mg. 3x. Essentially, "maxxed out" on both of them. I also take vicodin, about 1-1/2 hour before bedtime.

Recently, I tried something different with my doctor. We weaned off both the lyrica and gabapentin while starting on the Fentanyl Patch. (synthentic morphine.) Once weaned off of those two, the pain was terrible while on 25 mcg/hour patch. I had to start taking some low dosages of lyrica and gabapentin. Then my doctor took me off of the Fentanyl Patch, and started me on MS Contin. (morphine sulfate - 30 mg.) up to 3x. Still pain was so severe that I stopped it and went back on my regular dose of lyrica and gabapentin.
I go to a monthly "Pain Support Group". Our speaker was a Pharmacist who has specialize in Pain Medicine.
Long story short, Morphine, Fentanyl, Oxycontin, all "opioids" do NOT work for nerve pain.
As a matter of fact, they make it worse.
(When I came off the trial of fentanly and morphine, which was almost 7 weeks, I couldn't understand why my pain was worse, even though I was back up to my normal dosage.)
He told me that although the vicodin is in that same catagory, and it works for me, I should keep using it for breakthough pain and at bedtime.

You said, "And that is on lyrica, supplements, oxycodone, and hydromorphone. I can only imagine what it would feel like withOUT the medication ".... You may want to stop the hydormorhone and oxycondone. They may be making your pain worse over time. Maybe substitute with vicodin.

Mike B